Alot of spam on here recently.
People attempting to make money from others who are desparate/at a loss for their symptoms.
I hoped before diagnosis i would be told i had an infection or something that needed operating on, not to be told i had an incurable disease. Its wrong to put in anyones mind its this or its not that. This is the reason we have specialists who have practised if the field for many years.
People attempting to make money from others who are desparate/at a loss for their symptoms.
I hoped before diagnosis i would be told i had an infection or something that needed operating on, not to be told i had an incurable disease. Its wrong to put in anyones mind its this or its not that. This is the reason we have specialists who have practised if the field for many years.
03 Dec 2012 at 8:31 pm
#53
Ok, so, yes I am very cynical about so called, usually unqualified practitioners who prey on vulnerable people's desperation and make a very healthy profit from it and working in law, I see an awful lot of it, in many shapes and forms and all of it unethical. The aggressive posts that I see on this thread are only coming from one direction and in trying to defend what you perceive to be a panacea for all of us who do not have "genuine" ms, I'm afraid your tone and manner is not becoming and certainly not helping, what I can only assume, you believe to be your good intentions, regardless of what that motive may be. I for one, shall not be further replying to this thread because I believe to do so, is only encouraging each rebuttal from EJC and I believe adding fuel to his fire.
03 Dec 2012 at 8:38 pm
#54
Alot of spam on here recently.
People attempting to make money from others who are desparate/at a loss for their symptoms.
I hoped before diagnosis i would be told i had an infection or something that needed operating on, not to be told i had an incurable disease. Its wrong to put in anyones mind its this or its not that. This is the reason we have specialists who have practised if the field for many years.
This I understand completely.
Emma has a specialist who has practiced this field for many years. Her Neurologist at the East Surrey Hospital.
He openly admits medcine does not understand what MS is, or what to do to treat it. He will happily advise Emma take a drug that may or may not help supress possible future relapses, but he openly admits to not knowing what the drug is or how it works.
Many other peoples experience with their Neuro may be a lot more possitive. Many MS patients I meet have simply given up with their Neuro as they feel they have nothing to offer.
This thread got off on the wrong foot. The OP, Jen is angry, I've never met here but I've had conversations via forums with her. She's angry that 22 years of her life has been lost due to what she sees as a misdiagnosis. She want's to share this with other potential MS patients. Sometimes the way Jen presents her point of view can be taken as spam or confrontation. But when you read between the lines what you find is a angry person that's lost a lot of her prime life.
Like pretty much every other poster here, I'm not a doctor or specialist, I live with someone who I love dearly and want to see get better. Traditional Medicine has given up on Emma, I really mean that, her Neurologist is a collator if information and offers nothing in the way of support.
We have chosen to undertake our own research, we have discovered something that in Emma's particular case has provided such a relief of MS symptoms that it has quite literally given her her life back. She is now physicially rehabilitating and looking foward to life rather than the enevitability of permanent (rather than ocassional) wheelchair confinement. Emma is still an EDSS 65. to 6.0 but improving noticeably.
Am I wrong in sharing this information on an MS forum?
What other readers chose to do with this information is up to them, but it would be simply wrong to remove it from the forum.
03 Dec 2012 at 8:40 pm
#55
I believe the previous poster has hit on a truth here, the word incurable. What I am reading is an awful attempt in trying to turn people's minds from the truth that you and the op cannot face. It is incurable, face it, take the medication that was created to help. If the OP doesn't want to and your wife doesn't want to then so be it. If you really believe in the alternatives, please leave us all alone to get on with the path we have chosen or may need to in the future. Sam
03 Dec 2012 at 8:50 pm
#56 Ok, so, yes I am very cynical about so called, usually unqualified practitioners who prey on vulnerable people's desperation and make a very healthy profit from it and working in law, I see an awful lot of it, in many shapes and forms and all of it unethical. The aggressive posts that I see on this thread are only coming from one direction and in trying to defend what you perceive to be a panacea for all of us who do not have "genuine" ms, I'm afraid your tone and manner is not becoming and certainly not helping, what I can only assume, you believe to be your good intentions, regardless of what that motive may be. I for one, shall not be further replying to this thread because I believe to do so, is only encouraging each rebuttal from EJC and I believe adding fuel to his fire.
Firstly let me make one thing very clear to you, I am not the OP. The aggression in this thread is coming very clearly from more than one source,
I'd like a few of the posters on this thread, particularly the anonymous ones, to read the house rules and then reread thier posts and ask themsleves exactly who is the aggressor?
In what way has my tone been anything other than reasonable?
On your point of money and perceived fraudulent practictioners. Dr Amir is the only specialist I have ever come across that does not require and in fact refuses payment in full up front before treatment. It was one of the factors that swung our decision to go ahead, it's something I've never come across before. One year on it was the best decision we ever made.
What do you find so difficult to swallow about my posts?
03 Dec 2012 at 8:53 pm
#57 I believe the previous poster has hit on a truth here, the word incurable. What I am reading is an awful attempt in trying to turn people's minds from the truth that you and the op cannot face. It is incurable, face it, take the medication that was created to help. If the OP doesn't want to and your wife doesn't want to then so be it. If you really believe in the alternatives, please leave us all alone to get on with the path we have chosen or may need to in the future. Sam
Who is "Us" Samantha? Do you speak on behalf of the entire MS community that may read this forum?
Emma tried the drugs, they didn't agree with her. They may agree with you and good luck to whatever path you choose to take.
I do not judge you, who are you to judge me or the intention behind sharing Emma's treatment?
03 Dec 2012 at 8:59 pm
#58
Hi, I feel that if someone`s MS goes away or improves significanlty, then perhaps they were wrongly diagnosed in the first place.
What do you reckon to that idea?
I am glad things are on the up for you.
luv Pollx
Having had a look back through this thread from the beginning, the above post is probably the most sensible of the lot.
How many people have simply been misdiagnosed and are recieving completely inappropriate treatment?
03 Dec 2012 at 9:05 pm
#59
there seems to be a lot of tension in the replies to this post. It is good to air views and I don' t think Jencor should be shouted down. Her views are important to her and if she feels that this jaw treatment is helping so be it, we should all be pleased for her. Maybe the claims by the orthodontist /practioner? seem a little far fetched but I do believe that so many of these diseases are caused my more than one thing.
I am not an authority but in western medicine we treat the symptoms and try to find the cause but in eastern medicine they look at the whole body and possible imbalances. There must be a place for both approaches to help
As far as lesions go ( and I am new to all this so correct me if I am wrong) my neurologist said that scans are only a tool in diagnosis and he could take people of the street, scan them and find lesions. I have also read that some people have nasty neurological symptoms and they can't find any lesions on an mri.
I believe that the human body is " designed" to heal itself ( under the right circumstances) otherwise the human race would be extinct by now but this regretably doesnt happen all the time so pharmaceutical companies do have enormous role to play . Ongoing research is massively important and it takes years of costly trials for important and life saving drugs to come to market.
So as long as Jencor is not pushing this treatment as a cure- all, do let her have her say.
Maxie
Couldn't agree more, there is absolutely nothing wrong with healthy debate and alternaitve opinions.
03 Dec 2012 at 9:08 pm
#60
Hi Jen
I am sure you did not mean to upset people here and I hope you reconsider posting again. You must understand that everyone reacts differently and all of us have our problems which may make us more sensitive and prone to over-reaction.
There are so many unscrupulous people out there offering so called "cures" for MS and other diseases and we are all ( diagnosed or not ) vulnerable and desperate to take control and do something. So I am sure you can understand some folks reaction.
I myself am thinking of try LDN which again is un tested for MS but seems to have a large following, but I am sure that there are a lot of people out there who will say I am totally reckless !
So please don't disappear off the forum, everyones experience is different but non the less important.
Maxie
Emma tried LDN a few back and it just don't work for her. She found it gave her terrible headaches.
That said we know a number of pwMS who take LDN and swear buy it.
03 Dec 2012 at 10:04 pm
#61 
Tell me what Capoxone is, tell me what it's chemical make up is, tell me how it interacts with the body on a molecular level and what possible advantage this could be to someone suffering from MS.
I've so far asked this question ot Emmas Neurologist, to the Copaxone Nurse and to the manufacturer themselves, Teva. None have been able to answer the question.
I wonder if EJC would like to reconsider the last statement. There is no secret about what is in Copaxone:
It is a random polymer of four amino acids (tyrosine, alanine, lysine, and glutamic acid) that are found in the basic protein structure of myelin. Myelin is, of course, the insulating sheath around an axon. If you really want to get into the transmission of nerve impulses, along axons and across synapses, I can recommend a good basic text.
Of course, given the correspondence between Jenny Cornell and the MS Society - published on the "themsforum.org" website, you may not really want to know the technicalities. I note that the OP referred to "recycled cancer drugs" being used to treat MS. Since Copaxone does not appear to come into this category, it would be very informative if we (that is the members of this forum) could be told which drugs are in fact recycled cancer drugs.
Geoff
03 Dec 2012 at 10:14 pm
#62
I see reinforcements have arrived. How nice.
I am not going to get into a debate about any supposed improvements to any patients (although I could quite easily provide you with a list of alternative reasons that are contrary to the proponents' beliefs), however someone mentioned a doctor. Here I am. I have a PhD in neuroscience. I believe, therefore, that I am at least modestly qualified to give an opinion on the theory underlying this treatment.
I have chosen a snippet from the website that EJC normally frequents. It appears to be a direct quote from the orthodontist himself:
"I believe that most "MS lesions" are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms.
The immune system tries to get rid of this fluid which is in the wrong place but is unable to do so and the deposits calcify leading to the typical opaque lesions seen on MRI and CAT scans. At autopsy the increased immune function is wrongly diagnosed as an auto immune disorder."
And here is my opinion: I have never read such utter rubbish in my life!
The CSF leak part of the theory is ridiculous. I think that we are being asked to believe that pools of CSF lead to some sort of inflammatory response which leads to calcification of the surrounding tissue - much like a broken bone can heal with extra boney growth around it. (I assume this because I cannot believe that anyone even remotely medically aware would suggest that CSF carries calcium into the brain?? - the only other possibility underlying this "idea".) I will simply point out that, not only is the brain actually bathed in CSF, it moves constantly, is replaced several times a day and is not harmful to brain tissue, calcification is not part of the MS processes! (Incidentally what on earth has connective tissue (stoma) to do with anything?) But we come to the crux of the first sentence: the idea that MS lesions do not involve neurons. This is absolutely laughable! The word demyelination refers to the loss of the myelin coating of axons - axons being part of neurons. You cannot get much more neural than that! Moreover, demyelination is a fact. It is readily visible in wet tissue (i.e. actual brain matter) and there is no way that an expert could not tell the difference between it and calcified tissue.
Furthermore, the orthodontist clearly has no understanding of MRI. For a start, MS lesions look bright / white on T2 scans while calcification looks dark / black. There is no way that a radiologist would get the two confused. We get a glimpse into why the error has been made with the phrase "opaque lesions". OH DEAR! Clearly someone isn't aware that what shade of gray different types of matter appear on MRI depends on which settings are used to acquire the images. And yep, demyelination and calcification do not look the same on images taken with the same settings.
So there we have it.
The whole thing is based on outrageous and nonsensical speculation and gobbledegook. One thing is it not is science.
I am not going to get into a debate about any supposed improvements to any patients (although I could quite easily provide you with a list of alternative reasons that are contrary to the proponents' beliefs), however someone mentioned a doctor. Here I am. I have a PhD in neuroscience. I believe, therefore, that I am at least modestly qualified to give an opinion on the theory underlying this treatment.
I have chosen a snippet from the website that EJC normally frequents. It appears to be a direct quote from the orthodontist himself:
"I believe that most "MS lesions" are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms.
The immune system tries to get rid of this fluid which is in the wrong place but is unable to do so and the deposits calcify leading to the typical opaque lesions seen on MRI and CAT scans. At autopsy the increased immune function is wrongly diagnosed as an auto immune disorder."
And here is my opinion: I have never read such utter rubbish in my life!
The CSF leak part of the theory is ridiculous. I think that we are being asked to believe that pools of CSF lead to some sort of inflammatory response which leads to calcification of the surrounding tissue - much like a broken bone can heal with extra boney growth around it. (I assume this because I cannot believe that anyone even remotely medically aware would suggest that CSF carries calcium into the brain?? - the only other possibility underlying this "idea".) I will simply point out that, not only is the brain actually bathed in CSF, it moves constantly, is replaced several times a day and is not harmful to brain tissue, calcification is not part of the MS processes! (Incidentally what on earth has connective tissue (stoma) to do with anything?) But we come to the crux of the first sentence: the idea that MS lesions do not involve neurons. This is absolutely laughable! The word demyelination refers to the loss of the myelin coating of axons - axons being part of neurons. You cannot get much more neural than that! Moreover, demyelination is a fact. It is readily visible in wet tissue (i.e. actual brain matter) and there is no way that an expert could not tell the difference between it and calcified tissue.
Furthermore, the orthodontist clearly has no understanding of MRI. For a start, MS lesions look bright / white on T2 scans while calcification looks dark / black. There is no way that a radiologist would get the two confused. We get a glimpse into why the error has been made with the phrase "opaque lesions". OH DEAR! Clearly someone isn't aware that what shade of gray different types of matter appear on MRI depends on which settings are used to acquire the images. And yep, demyelination and calcification do not look the same on images taken with the same settings.
So there we have it.
The whole thing is based on outrageous and nonsensical speculation and gobbledegook. One thing is it not is science.
03 Dec 2012 at 10:15 pm
#63 
I have had an 'MS' diagnosis for 22 years and the symptoms were gradually crippling me until I started treatment for TMJ and skeletal asymmetries five months ago. Now my 'progressive MS' is regressing, symptoms are disappearing, I have my energy back! Follow my story here http://themsforum.org/viewtopic.php?f=9&t=6[/quote]
I find it truly amazing that you have had an 'MS' diagnosis for 22 years and this is the first time that you have posted on this forum. Truly unbelievable. This is the first place I came to when I started with symptoms at the beginning of the year and is the only forum I use. As I said before, truly and utterly unbelievable. I haven't even bothered looking at the link you've posted.
03 Dec 2012 at 10:18 pm
#64
Sorry for the font colours going wonky. Not sure how that happened. It should all be blue - much like the language I used when I first read the quote..... along the lines of "OMG! OMG! OMG! I have never read such [lots of filtered words]!. How can anyone believe this [lots of filtered words!]?!" You get the drift :-)
03 Dec 2012 at 10:32 pm
#65
read a wee bit of this post and thought id throw my bit in.
It is true that i am not sure about the "jaw theory"
what i am sure about is i like to listen to all the theories that might offer an explanation to what causes the disease.
I like to cling onto any hope that i can.That one day i might get better and i can live a full day without MS creeping into my thoughts. The fact is that there is no one on the planet that can pin point that exact cause of it at this time.
Another fact is that all the current treatments of MS via the health service are not the answer, ive never heard of one person thats been cured due to Tysabri etc. I do feel that they are useful though.
I dont want to seem them get close, i want to see them get it right, and i know its not easy.
I look on the internet every single day, i look to see if anythings changed, and every new theory i hear i always hope its right.
It is true that i am not sure about the "jaw theory"
what i am sure about is i like to listen to all the theories that might offer an explanation to what causes the disease.
I like to cling onto any hope that i can.That one day i might get better and i can live a full day without MS creeping into my thoughts. The fact is that there is no one on the planet that can pin point that exact cause of it at this time.
Another fact is that all the current treatments of MS via the health service are not the answer, ive never heard of one person thats been cured due to Tysabri etc. I do feel that they are useful though.
I dont want to seem them get close, i want to see them get it right, and i know its not easy.
I look on the internet every single day, i look to see if anythings changed, and every new theory i hear i always hope its right.
03 Dec 2012 at 10:35 pm
#66
A couple of months ago I rang the Essential Health Clinic in Scotland to ask about CCSVI. I don't have an MS diagnosis so they said they could not screen me but the woman said they were having more success with this jaw alignment. Does anyone know about them ? - are they 'quacks' too ? Today I looked on their website but couldnt find anything written about this treatment.
A lot of people on this post are talking about the epson bar virus. That is supposedly also linked to hodgkins lymphoma which I had 22 years ago. I asked my neuro was there a link between that and my cervical spine issues. He told me that the Epson Barr Virus is blamed for loads of things including MS and there is no proof. Yet when you look at the Barts MS Blog they are convinced there IS a link. Because of this I wondered if I had the EB virus so I went down this route momentarily and got talking to quite an excentric man who had developed 'potions' to clear up the epson barr virus. He had his own website. Anyway I didnt go for them.
I was also talking to the one of my neuros about the CCSVI. He said it was rubbish noproof dangerous etc. I then said that a cardiac surgeon in this very hospital (Royal Victoria Belfast) has had it done and swears by it for his MS. My neuro shrugged his shoulders and said he could not comment on anothers treatment.
Basically what I am trying to say is that a non medical person like myself does not know who to believe. An eye surgeon friend of mine has stated that neurolgy is a guessing game. I have said before maybe MS is a symptom of several different things. Some it could be autoimmune, others it could be Epson Barr or CCSVI. Mine if I do have it could have been triggered by radiation treatment. As one neuro suspects MS and the other radiation myleopathy - Maybe they are both right!!!!
I do actually enjoy these debates.
Moyna x
A lot of people on this post are talking about the epson bar virus. That is supposedly also linked to hodgkins lymphoma which I had 22 years ago. I asked my neuro was there a link between that and my cervical spine issues. He told me that the Epson Barr Virus is blamed for loads of things including MS and there is no proof. Yet when you look at the Barts MS Blog they are convinced there IS a link. Because of this I wondered if I had the EB virus so I went down this route momentarily and got talking to quite an excentric man who had developed 'potions' to clear up the epson barr virus. He had his own website. Anyway I didnt go for them.
I was also talking to the one of my neuros about the CCSVI. He said it was rubbish noproof dangerous etc. I then said that a cardiac surgeon in this very hospital (Royal Victoria Belfast) has had it done and swears by it for his MS. My neuro shrugged his shoulders and said he could not comment on anothers treatment.
Basically what I am trying to say is that a non medical person like myself does not know who to believe. An eye surgeon friend of mine has stated that neurolgy is a guessing game. I have said before maybe MS is a symptom of several different things. Some it could be autoimmune, others it could be Epson Barr or CCSVI. Mine if I do have it could have been triggered by radiation treatment. As one neuro suspects MS and the other radiation myleopathy - Maybe they are both right!!!!
I do actually enjoy these debates.
Moyna x
03 Dec 2012 at 10:38 pm
#67
Mate, save your money. TMJ is NOT healing MS. It's helping some people previously misdiagnosed with MS. They never had MS in the first place. The approach towards true MS sufferers is grossly misleading and potentially damaging.
03 Dec 2012 at 11:04 pm
#68
"I believe that most "MS lesions" are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms.
Oh my goodness, this Dr Amir is spreading dangerous misinformation. Thank you, Karen, for that really helpful information about MRI lesions and calcification deposits.
And another fact about CSF leaks is that they obey the laws of gravity. CSF fluid can and does leak due to damage to the spinal cord but when this happens the CSF flows DOWN away from the brain resulting in a loss of CSF volume in the brain and spinal cord as the fluid seeps out into the epidural space. This gives rise to the dreaded lumbar puncture headache for example. So if you are talking about spinal mislignments causing injury to the spine and thus injuring the spinal dura resulting in a CSF leak it will NOT flow to the brain. Where it will NOT cause calcification deposits as clearly expplained by Karen.
There is no way that the CSF can leak UPWARDS. Get a grip and THINK, people........
The reality is that there are quacks and charlatans on the internet and who practice their so called "treatments" but they are preying on people's desperation for a cure for awful diseases. MS is awful and we all wish we didn't have it but to put yourself into the hands of someone who is cynically ripping money off you and deliberately feeding you total bunkum is putting your long term welfare and helath at serious risk.
Develop some criticial thinking skills and learn some basic medical knowledge before being so ready to believe these charlatans.
Belinda
03 Dec 2012 at 11:09 pm
#69
I guess I didn't make myself clear enough so I'll say it again in fewer words.....
The theory that the orthodontist (I repeat, orthodontist) has come up with effectively states that demyelination doesn't actually happen, instead our lesions are due to calcification (sort of bony scars). What he fails to recognise is that demyelination in MS is a unarguable fact. But even if we forgo that, demyelination and calcification do not look the same on MRI.
The whole thing is utter rubbish.
The theory that the orthodontist (I repeat, orthodontist) has come up with effectively states that demyelination doesn't actually happen, instead our lesions are due to calcification (sort of bony scars). What he fails to recognise is that demyelination in MS is a unarguable fact. But even if we forgo that, demyelination and calcification do not look the same on MRI.
The whole thing is utter rubbish.
03 Dec 2012 at 11:14 pm
#70
Oy! Belinda!!! A little care with the quote function pulease! 
Just to clarify, while Belinda's post says "Rizzo wrote", I didn't actually say that ****, I was merely quoting it!
Just to clarify, while Belinda's post says "Rizzo wrote", I didn't actually say that ****, I was merely quoting it!
03 Dec 2012 at 11:19 pm
#71
Just to clarify: At the beginning of my post above where I have quoted rizzo (Karen):
Karen did not say that "I believe that most "MS lesions" are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms."
She was quoting from Dr Amir when she wrote that. My apologies for anyconfusion.
B xx
Karen did not say that "I believe that most "MS lesions" are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms."
She was quoting from Dr Amir when she wrote that. My apologies for anyconfusion.
B xx
03 Dec 2012 at 11:21 pm
#72
Tell me what Capoxone is, tell me what it's chemical make up is, tell me how it interacts with the body on a molecular level and what possible advantage this could be to someone suffering from MS.
I've so far asked this question ot Emmas Neurologist, to the Copaxone Nurse and to the manufacturer themselves, Teva. None have been able to answer the question.
I wonder if EJC would like to reconsider the last statement. There is no secret about what is in Copaxone:
It is a random polymer of four amino acids (tyrosine, alanine, lysine, and glutamic acid) that are found in the basic protein structure of myelin. Myelin is, of course, the insulating sheath around an axon. If you really want to get into the transmission of nerve impulses, along axons and across synapses, I can recommend a good basic text.
Of course, given the correspondence between Jenny Cornell and the MS Society - published on the "themsforum.org" website, you may not really want to know the technicalities. I note that the OP referred to "recycled cancer drugs" being used to treat MS. Since Copaxone does not appear to come into this category, it would be very informative if we (that is the members of this forum) could be told which drugs are in fact recycled cancer drugs.
Geoff
I can't answer on Jenny's behalf ans I'm not her, (despite a number of people here thinking I am).
I visted Emma's Neurosurgeon at East Surrey Hospital Last Monday. He was not able to expalin how Cpaxone worked or what it was. The man prescribing it was unable to explain what it did.
How is you seem to know - yet the Copaxone nurse, the Nuero and even Teva can't answer these questions after Emma having taken the drug for over a year?
So tell me how it works, what exactly does it do? I can't seem to get a straight answer to that question.
03 Dec 2012 at 11:29 pm
#73
Mate, save your money. TMJ is NOT healing MS. It's helping some people previously misdiagnosed with MS. They never had MS in the first place. The approach towards true MS sufferers is grossly misleading and potentially damaging.
Emma has lesions, has had a lumber puncture and positive traditional diagnosis of "MS".
The thing is, you may be absolutely right - all of this could be complete hogwash and a misdiagnosis, that may well be why Emma is responding to jaw mislalignement treatment.
That's actually what is fundamentally being suggested, what if the vast majority of patients diagnose with "MS" are infact misdiagnosed? What if the fundamental current idicators for diagnosis are actually wrong and tens of thousands of people are being treated for a condition they don't actually have simply becuase they fullfill a handful of criteria?
In a couple of sentences you've actually got across what I'm trying to suggest here. Jaw misalginment doesn't treat, cure or do anything else to MS - the problem may actually be vast numbers of people don't actually have MS, they've been misdiagnosed.
03 Dec 2012 at 11:32 pm
#74
I looked at this post when new, folllowed the link having read the post with a degree of scepticism already present. Noted the link for request to 'follow my story', was straight to '...you are permanently banned from this forum...'. Would you care to explain?
03 Dec 2012 at 11:41 pm
#75
A couple of months ago I rang the Essential Health Clinic in Scotland to ask about CCSVI. I don't have an MS diagnosis so they said they could not screen me but the woman said they were having more success with this jaw alignment. Does anyone know about them ? - are they 'quacks' too ? Today I looked on their website but couldnt find anything written about this treatment.
A lot of people on this post are talking about the epson bar virus. That is supposedly also linked to hodgkins lymphoma which I had 22 years ago. I asked my neuro was there a link between that and my cervical spine issues. He told me that the Epson Barr Virus is blamed for loads of things including MS and there is no proof. Yet when you look at the Barts MS Blog they are convinced there IS a link. Because of this I wondered if I had the EB virus so I went down this route momentarily and got talking to quite an excentric man who had developed 'potions' to clear up the epson barr virus. He had his own website. Anyway I didnt go for them.
I was also talking to the one of my neuros about the CCSVI. He said it was rubbish noproof dangerous etc. I then said that a cardiac surgeon in this very hospital (Royal Victoria Belfast) has had it done and swears by it for his MS. My neuro shrugged his shoulders and said he could not comment on anothers treatment.
Basically what I am trying to say is that a non medical person like myself does not know who to believe. An eye surgeon friend of mine has stated that neurolgy is a guessing game. I have said before maybe MS is a symptom of several different things. Some it could be autoimmune, others it could be Epson Barr or CCSVI. Mine if I do have it could have been triggered by radiation treatment. As one neuro suspects MS and the other radiation myleopathy - Maybe they are both right!!!!
I do actually enjoy these debates.
Moyna x
Moyna's post here highlights the very issue.
Is a cardiac surgeon more qualified than a Neurologist to comment on what is and what isn't MS or what is and what isn't suitable treatment?
Do any of these people actually know what MS is and why people get it? No, of cousre they don't it's all still a best guess.
Just take a look on this forum at any random thread and consider how so many people are in an awful limbo becasue no one can with any degree of certainty label them with the tag "MS".
What if the there is a fundamental flaw in the accepted practice of diagnosis and current indicators?
The number of posts on this thread suggesting skeletal or vascular treatment couldn't possibly treat MS might in fact be absolutely right, as it's just as likely to turn out that the "MS" diagnosis was so fundamentally wrong to start with that these treatements are not for anything neurological to start with.
Now we're starting to get somewhere.
03 Dec 2012 at 11:46 pm
#76 I looked at this post when new, folllowed the link having read the post with a degree of scepticism already present. Noted the link for request to 'follow my story', was straight to '...you are permanently banned from this forum...'. Would you care to explain?
To which link are you referring?
04 Dec 2012 at 12:31 am
#77
I eagerly await the reply to my posts, EHC.
And may I say that I am delighted to learn more about your reason for coming onto this forum. You seem to want to clarify that:
1. Jaw realignment does nothing for MS.
2. "Vast numbers" of us (including your wife) don't actually have MS. (Please do have a stab at some actual numbers. It would be most enlightening. Perhaps you could also have a stab at telling us what we actually do have wrong with us?)
Incidentally, I completely agree with you that skeletol and vascular treatments do nothing for MS. Not sure how you saying that shows this thread is getting somewhere though - I believe I said something along those lines in my very first post, which you can find on page one of this thread.
One more thing: perhaps you could explain how "so many people are in an awful limbo becasue no one can with any degree of certainty label them with the tag "MS"" and yet "tens of thousands of people are being treated for a condition they don't actually have simply becuase they fullfill a handful of criteria"?
And may I say that I am delighted to learn more about your reason for coming onto this forum. You seem to want to clarify that:
1. Jaw realignment does nothing for MS.
2. "Vast numbers" of us (including your wife) don't actually have MS. (Please do have a stab at some actual numbers. It would be most enlightening. Perhaps you could also have a stab at telling us what we actually do have wrong with us?)
Incidentally, I completely agree with you that skeletol and vascular treatments do nothing for MS. Not sure how you saying that shows this thread is getting somewhere though - I believe I said something along those lines in my very first post, which you can find on page one of this thread.
One more thing: perhaps you could explain how "so many people are in an awful limbo becasue no one can with any degree of certainty label them with the tag "MS"" and yet "tens of thousands of people are being treated for a condition they don't actually have simply becuase they fullfill a handful of criteria"?
04 Dec 2012 at 9:14 am
#78
Dear EJC,
When I was first ill, I had terrible spasms that pulled my body out of alignment. My knees didn't track properly, my sinuses wouldn't drain or resonate (I'm a singer).
You could see the spasms moving over my back, like some sort of science-fiction creature. No one knew what was wrong with me and they missed MS as they were focussing on keeping me alive as my BP had gone up to 260/160 and without treatment I was going to die.
After I was discharged from hospital - (on BP meds forever, which I don't mind and now I'm on 4) I was in trouble with l'Hermites sign, numbness, rigid facial muscles and fatigue.
I went to see a chiropractor who working with massage and re-alignment, helped enormously. I could sing again after 6 sessions - but - these are MS symptoms. Not MS - but symptoms caused by MS.
Later, (8 years)when I got my diagnosis, I was in a mess again, with permanent knee damage, due to lack of nerve conductivity and I couldn't lie flat, so my husband had to keep putting my hip 'back' so that I could lie down for the MRI.
I was able to start Rebif after my diagnosis, which slowed down my relapse rate from every 8 weeks to one every 3 years.
This controlled the relapses - SO - now this is important, that my body could recover from the previous year of hell.
Your wife's pain and nerve pain is most likely caused by the secondary effects of MS. Seeing an osteopath or a chiropractor can really help to control the spasms and pain. My l'hermittes sign has gone as well. It went on its own.
Not everyone is the same. That's the awful truth about MS. I'm glad your wife has responded well to jaw realignment. No one has any problem with this, but Dr Amir's theories about MS are wrong. He really is not going to cure all those many ailments listed on the forum above. How can jaw relagnment 'cure' schizophrenia?
Anyone - I cannot emphasise this enough, ANYONE knows that MS manifests itself in many ways and this is what makes it so hard to treat or control.
Many people on this site take LDN. I took it for 3 years, but it no longer works for me. I still take Rebif, which is still working after 12 years and my husband helps to alleviate the muscle spasms.
I don't eat gluten as it makes my nerve pain worse.
I'm open-minded, but not to quackery. Claiming that MS doesn't exist - oh, did you see that one about Lyme disease? According to Owndoc.com MS doesn't exist but is Lyme. How does that chime with Dr Amir's claim?
Jencor was offensive in her first post. Yes, she does seem to be very angry. She may well be SPMS by now and as anyone with MS and curiosity knows, once you are SPMS the DMDs aren't prescribed - unless you have relapsing SPMS.
Again, complicated.
I have a friend who had CCSVI treatment 3 times and her veins are clear and dilated now. However, her MS is worse. It's not going to work for many people and it doesn't make it a cure for MS. There is NO CURE FOR MS.
There are drugs that can stop/slow the relapse rate in RRMS/PRMS and give the MSer a better quality of life.
As for progression? No one knows for sure. I haven't progressed in 12 years. I think that is down to luck. My neuro thinks it's down to early treatment.
Treating horrible symptoms such as nerve pain and spasms and tracking disorders is important. Endorphins are important. Vitamin D3 supplementation is important.
MS exists. That's it.
When I was first ill, I had terrible spasms that pulled my body out of alignment. My knees didn't track properly, my sinuses wouldn't drain or resonate (I'm a singer).
You could see the spasms moving over my back, like some sort of science-fiction creature. No one knew what was wrong with me and they missed MS as they were focussing on keeping me alive as my BP had gone up to 260/160 and without treatment I was going to die.
After I was discharged from hospital - (on BP meds forever, which I don't mind and now I'm on 4) I was in trouble with l'Hermites sign, numbness, rigid facial muscles and fatigue.
I went to see a chiropractor who working with massage and re-alignment, helped enormously. I could sing again after 6 sessions - but - these are MS symptoms. Not MS - but symptoms caused by MS.
Later, (8 years)when I got my diagnosis, I was in a mess again, with permanent knee damage, due to lack of nerve conductivity and I couldn't lie flat, so my husband had to keep putting my hip 'back' so that I could lie down for the MRI.
I was able to start Rebif after my diagnosis, which slowed down my relapse rate from every 8 weeks to one every 3 years.
This controlled the relapses - SO - now this is important, that my body could recover from the previous year of hell.
Your wife's pain and nerve pain is most likely caused by the secondary effects of MS. Seeing an osteopath or a chiropractor can really help to control the spasms and pain. My l'hermittes sign has gone as well. It went on its own.
Not everyone is the same. That's the awful truth about MS. I'm glad your wife has responded well to jaw realignment. No one has any problem with this, but Dr Amir's theories about MS are wrong. He really is not going to cure all those many ailments listed on the forum above. How can jaw relagnment 'cure' schizophrenia?
Anyone - I cannot emphasise this enough, ANYONE knows that MS manifests itself in many ways and this is what makes it so hard to treat or control.
Many people on this site take LDN. I took it for 3 years, but it no longer works for me. I still take Rebif, which is still working after 12 years and my husband helps to alleviate the muscle spasms.
I don't eat gluten as it makes my nerve pain worse.
I'm open-minded, but not to quackery. Claiming that MS doesn't exist - oh, did you see that one about Lyme disease? According to Owndoc.com MS doesn't exist but is Lyme. How does that chime with Dr Amir's claim?
Jencor was offensive in her first post. Yes, she does seem to be very angry. She may well be SPMS by now and as anyone with MS and curiosity knows, once you are SPMS the DMDs aren't prescribed - unless you have relapsing SPMS.
Again, complicated.
I have a friend who had CCSVI treatment 3 times and her veins are clear and dilated now. However, her MS is worse. It's not going to work for many people and it doesn't make it a cure for MS. There is NO CURE FOR MS.
There are drugs that can stop/slow the relapse rate in RRMS/PRMS and give the MSer a better quality of life.
As for progression? No one knows for sure. I haven't progressed in 12 years. I think that is down to luck. My neuro thinks it's down to early treatment.
Treating horrible symptoms such as nerve pain and spasms and tracking disorders is important. Endorphins are important. Vitamin D3 supplementation is important.
MS exists. That's it.
04 Dec 2012 at 9:58 am
#79 So EJC, you now appear to be saying that MS doesn’t actually exist and that people with MS have been misdiagnosed and have something else wrong with them that is not even necessarily neurological.
Again, let’s get some basic facts on the table. Given this is being discussed on the Newbies Forum it is terribly important that we disseminate accurate information as so many people reading this are newcomers to the whole MS field and are still at the bottom of a very steep learning curve. That is why the original post and your replies are making me so angry. Spreading misinformed garbage is incredibly irresponsible in the Forum.
Anyway, back to basic facts. You have been saying that MS lesions are not identifiable as anything specific and that they may not be indicative of any disease entity known as MS. That there is no way of testing for or definitively saying whether or not someone actually has MS and that neurologists are basically lumping people together into one basket when presenting with a range of symptoms that according to you and the dubious Dr Amir are caused by spinal and jaw misalignments.
I beg to differ. There are two absolutely definitive ways of testing for MS. By taking samples of brain tissue either at autopsy or by a brain biopsy doctors are able to very definitely identify the chemical and structural changes in an MS lesion. There are inflammatory markers, changes to the myelin sheath and to the neurons and axons that ONLY occur in MS. They may not be readily distinguishable on MRI as being different from a stroke or migraine or numerous other causes of lesions but on biopsy they most definitely have their own discreet characteristics.
Some people who present with an “atypical” form of MS are offered a brain biopsy as a way of getting a definite biopsy. (I was myself although I refused. Just a bit too invasive.) And many cases of clinically silent MS have been inadvertently discovered on autopsy and many, many other cases have been posthumously confirmed on biopsy.
Since the advent of various Brain Banks around the world where people with MS are able to donate their brains for research even more work has been done in this field and there is no doubt that MS lesions have definite characteristic features that are unique to the disease.
So please, no more of this nonsense that MS doesn’t exist. Of course it does.
Belinda
04 Dec 2012 at 10:22 am
#80
So EJC, you now appear to be saying that MS doesn’t actually exist and that people with MS have been misdiagnosed and have something else wrong with them that is not even necessarily neurological.
Belinda
Please highlight the post where I made this statement (in bold).
04 Dec 2012 at 10:24 am
#81
I see reinforcements have arrived. How nice.
I see reinforcements have arrived. How nice.
I think we are just 2 of his 100's of successfully treated patients. They are probably having a good laugh reading all this drivel.
I am not going to get into a debate about any supposed improvements to any patients (although I could quite easily provide you with a list of alternative reasons that are contrary to the proponents' beliefs), however someone mentioned a doctor. Here I am. I have a PhD in neuroscience. I believe, therefore, that I am at least modestly qualified to give an opinion on the theory underlying this treatment.
Excellent so now we can have a good debate with an educated man.
I have chosen a snippet from the website that EJC nor
mally frequents. It appears to be a direct quote from the orthodontist himself:
"I believe that most "MS lesions" are a consequence of CSF leaking into the brain stroma - they are not lesions in the neural tissue as such otherwise I could not so rapidly correct the symptoms.
The immune system tries to get rid of this fluid which is in the wrong place but is unable to do so and the deposits calcify leading to the typical opaque lesions seen on MRI and CAT scans. At autopsy the increased immune function is wrongly diagnosed as an auto immune disorder."
You have obviuously not availed yourself about the latest research befiore trying to criticise Dr Amir:
Major Diagnostic Breakthrough in Multiple Sclerosis Achieved With Advanced UPRIGHT® MRIUPRIGHT MRI Scanner and its revolutionary findings confirming what Doctor Amir has said. It has also objectively gone on to confirm cervical asymmetries as the underlying reasons behind MS disabilities. It clearly shows the extravasation of the CSF but says that it leaks into brain parenchyma. Dr Amir's experience shows that the patients are recovering too quickly for parenchymal damage and he speculated that it may be that the CSF leaks into the brain stroma. He also clearly stated that he remains corrected on this speculation.
Please read this link:
http://www.fonar.com/news/100511.htm
And here is my opinion: I have never read such utter rubbish in my life!
Rubbish to you but life saver for many of us.
The CSF leak part of the theory is ridiculous. I think that we are being asked to believe that pools of CSF lead to some sort of inflammatory response which leads to calcification of the surrounding tissue - much like a broken bone can heal with extra boney growth around it. (I assume this because I cannot believe that anyone even remotely medically aware would suggest that CSF carries calcium into the brain?? - the only other possibility underlying this "idea".) I will simply point out that, not only is the brain actually bathed in CSF, it moves constantly, is replaced several times a day and is not harmful to brain tissue, calcification is not part of the MS processes! (Incidentally what on earth has connective tissue (stoma) to do with anything?) But we come to the crux of the first sentence: the idea that MS lesions do not involve neurons. This is absolutely laughable! The word demyelination refers to the loss of the myelin coating of axons - axons being part of neurons. You cannot get much more neural than that! Moreover, demyelination is a fact. It is readily visible in wet tissue (i.e. actual brain matter) and there is no way that an expert could not tell the difference between it and calcified tissue.
MS lesions may be causing incapacity as far as you are concerned but the experience of many recovering patients confirms what Dr Amir postulates.
Furthermore, the orthodontist clearly has no understanding of MRI. For a start, MS lesions look bright / white on T2 scans while calcification looks dark / black. There is no way that a radiologist would get the two confused. We get a glimpse into why the error has been made with the phrase "opaque lesions". OH DEAR! Clearly someone isn't aware that what shade of gray different types of matter appear on MRI depends on which settings are used to acquire the images. And yep, demyelination and calcification do not look the same on images taken with the same settings.
So calcification looks black Does it now? So teeth should appear black and bone should appear black! I am shocked where you got your doctorate from.
So there we have it.
The whole thing is based on outrageous and nonsensical speculation and gobbledegook. One thing is it not is science.
If your intentions were altruistic you would want to really see the recovering patients, you would want to visit Dr Amir to see whether he really has anything substantive to offer, you would want to see his objective graphical presentations of patient recovery but without having any basis you have the cheec to make libellous claims against him.
04 Dec 2012 at 10:31 am
#82
MS exists. That's it.
I have at no point suggested MS Doesn't exist, what I am suggesting is huge numbers of people are being wrongly diagnosed with "MS".
04 Dec 2012 at 10:46 am
#83 Exactly!
Spreading misinformed garbage is incredibly irresponsible in the Forum.
04 Dec 2012 at 10:51 am
#84
So EJC, you now appear to be saying that MS doesn’t actually exist and that people with MS have been misdiagnosed and have something else wrong with them that is not even necessarily neurological.
Belinda
Please highlight the post where I made this statement (in bold).
The number of posts on this thread suggesting skeletal or vascular treatment couldn't possibly treat MS might in fact be absolutely right, as it's just as likely to turn out that the "MS" diagnosis was so fundamentally wrong to start with that these treatements are not for anything neurological to start with.
Now we're starting to get somewhere.
EJC, I didn't quote you directly. I said, "you now appear to be saying..." meaning that having read your comment quoted above (and highlighted in bold) combined with Dr Amir's statements gives the impresion you are saying that MS is more often misdiagnosed than correctly diagnosed and that the majority of MS patients are being mistreated for a condition they don't have. This leaves the reader with the impression that the very existence of MS itself is doubtful in your mind and that spinal misalignement is far more likely a cause for the myriad of symptoms known collectively as MS.
Are you now saying that MS IS in fact a neurological disease of the Central Nervous System caused by an auto-immune disorder and NOT a spinal misalignemt after all? That a handful of people may have a completely DIFFERENT condition called TMJ (teromandibular joint disorder) and would therefore benefit from seeing an orthodontist? In which case why don't you go and talk about it on the TMJ boards as THAT condition is clearly NOT MS.
Belinda
04 Dec 2012 at 10:55 am
#85
MS exists. That's it.
I have at no point suggested MS Doesn't exist, what I am suggesting is huge numbers of people are being wrongly diagnosed with "MS".
You know, it would be nice to read some acknowledgement of my long post. It was supportive of the problems that spasticity and spasms do to the body.
Answer some of the other posters - people with MS's posts in a polite and respectful manner? Is is so hard to have a discussion?
I went to TIMS (been a member for years) and read about your wife's progress. It's been a bit up and down hasn't it?
I would expect that by the end of next year, that she'll still be relying on you for balance. Her muscle wastage will take a long time to improve. My right leg is wasted, so I exercise it a lot - but it will always be thinner than the left.
Let's face facts. You've been brainwashed by the worst shills on TIMS. You won't answer anyone's points here - Geoff explained how Copaxone works. ANYONE can find out how it works.
I took time to explain why I think Dr Amir isn't helping himself with his bad understanding of how MS works. Why don't you answer my points? Or even acknowledge that spasms and spasticity can be alleviated with therapy - massage, orthodentistry or chiropractic therapy? I think I deserve a response to that.
04 Dec 2012 at 12:02 pm
#86
Before I get to my main points, I would like to explain that it is normal practice to cite a study that you agree with in support of your own theory. Incidentally, were you aware that "all but one [of the MSers in this study] were found to have a history of serious prior cervical trauma which resulted in significant cervical pathology" and that (rather unsurprisingly?) "In all but one MS patient, anatomic pathologies were found to be more severe in the upright position than in the recumbent position. Similarly, CSF flow abnormalities were found to be more severe in the upright position than in the recumbent position in all but one MS patient."
Well, there we go: a small study of people with MS who had previous trauma causing significant damage to their neck had CSF flow abormalities. How enlightening. Hmm. Maybe not!
But then, your orthodontist doesn't agree with it anyway. Instead, he has his own theory: it's not demyelination, it's calcification.
You did not even begin to address my challenges to the orthodontist's belief that MS lesions do not cause neural damage, but Belinda has already unequivocally explained the reality of demyelination so I will restrict myself to your comment about calcification and MRI:
"So calcification looks black Does it now? So teeth should appear black and bone should appear black! I am shocked where you got your doctorate from."
Fwiw, my PhD is from the University of London. However, even a first year undergraduate student could tell you how ludicrous your comment is. In fact, when I read it, I actually laughed and spent the next 10 minutes grinning - thanks for that :-)
A clue to why I found it funny was the words "T2 scans" in my earlier reply. A brief, very basic lesson in MRI:
MR scanners can be set to acquire data in several different ways. Different types of matter emit different levels of signal based on these settings. The signal data are transformed into images using complex mathematics (for those who are interested, Fourier maths). High signal appears bright in the images. Low signal appears dark in the images. The same tissue can be made to appear any shade of gray, depending on which settings are used. If we take a very basic example, the brain's white matter and gray matter have sufficiently different characteristics that they look different on MRI. In a T1 scan, white matter looks pale and gray matter looks darker (CSF looks black). In a T2 scan, white matter looks dark and gray matter looks pale (CSF looks white). So there we have it.
Calcification and demyelination look different and, on T2 scans, calcification is dark/black whereas demyelination is bright/white! I'd love you to try and explain how any radiologist would fail to notice this?
PS "Objective" graphs? Self report is not classed as an objective measure. It doesn't matter how many pretty pictures one produces, the data are still subjective.
Well, there we go: a small study of people with MS who had previous trauma causing significant damage to their neck had CSF flow abormalities. How enlightening. Hmm. Maybe not!
But then, your orthodontist doesn't agree with it anyway. Instead, he has his own theory: it's not demyelination, it's calcification.
You did not even begin to address my challenges to the orthodontist's belief that MS lesions do not cause neural damage, but Belinda has already unequivocally explained the reality of demyelination so I will restrict myself to your comment about calcification and MRI:
"So calcification looks black Does it now? So teeth should appear black and bone should appear black! I am shocked where you got your doctorate from."
Fwiw, my PhD is from the University of London. However, even a first year undergraduate student could tell you how ludicrous your comment is. In fact, when I read it, I actually laughed and spent the next 10 minutes grinning - thanks for that :-)
A clue to why I found it funny was the words "T2 scans" in my earlier reply. A brief, very basic lesson in MRI:
MR scanners can be set to acquire data in several different ways. Different types of matter emit different levels of signal based on these settings. The signal data are transformed into images using complex mathematics (for those who are interested, Fourier maths). High signal appears bright in the images. Low signal appears dark in the images. The same tissue can be made to appear any shade of gray, depending on which settings are used. If we take a very basic example, the brain's white matter and gray matter have sufficiently different characteristics that they look different on MRI. In a T1 scan, white matter looks pale and gray matter looks darker (CSF looks black). In a T2 scan, white matter looks dark and gray matter looks pale (CSF looks white). So there we have it.
Calcification and demyelination look different and, on T2 scans, calcification is dark/black whereas demyelination is bright/white! I'd love you to try and explain how any radiologist would fail to notice this?
PS "Objective" graphs? Self report is not classed as an objective measure. It doesn't matter how many pretty pictures one produces, the data are still subjective.
04 Dec 2012 at 12:12 pm
#87
Got another for you. Do you think brain and spinal cord turning to bone night have been picked up before? Think autopsy, I can see it now...Doctor 1..." Blow me down, this persons brain and spinal cord has turned to bone!"
Doctor 2. " Good gosh, so MS IS calcification of CSF!!!!"
Didnt happen did it?
Load of rubbish isn't it?
Doctor 2. " Good gosh, so MS IS calcification of CSF!!!!"
Didnt happen did it?
Load of rubbish isn't it?
04 Dec 2012 at 12:13 pm
#88
Tell me what Capoxone is, tell me what it's chemical make up is, tell me how it interacts with the body on a molecular level and what possible advantage this could be to someone suffering from MS.
I've so far asked this question ot Emmas Neurologist, to the Copaxone Nurse and to the manufacturer themselves, Teva. None have been able to answer the question.
I wonder if EJC would like to reconsider the last statement. There is no secret about what is in Copaxone:
It is a random polymer of four amino acids (tyrosine, alanine, lysine, and glutamic acid) that are found in the basic protein structure of myelin. Myelin is, of course, the insulating sheath around an axon. If you really want to get into the transmission of nerve impulses, along axons and across synapses, I can recommend a good basic text.
Of course, given the correspondence between Jenny Cornell and the MS Society - published on the "themsforum.org" website, you may not really want to know the technicalities. I note that the OP referred to "recycled cancer drugs" being used to treat MS. Since Copaxone does not appear to come into this category, it would be very informative if we (that is the members of this forum) could be told which drugs are in fact recycled cancer drugs.
Geoff
Geoff,
Have you ever read this letter from the FDA to Teva?
http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformati...
04 Dec 2012 at 12:33 pm
#89
So EJC, you now appear to be saying that MS doesn’t actually exist and that people with MS have been misdiagnosed and have something else wrong with them that is not even necessarily neurological.
I stand by it. My statements do not need your approval. This is a fact that is glaringly obvious to very many patients now. I would like to ask a very simple question based on this question and your response. Why are you here right now on this forum?
I stand by it. My statements do not need your approval. This is a fact that is glaringly obvious to very many patients now. I would like to ask a very simple question based on this question and your response. Why are you here right now on this forum?
04 Dec 2012 at 12:35 pm
#90
EJC, I didn't quote you directly. I said, "you now appear to be saying..." meaning that having read your comment quoted above (and highlighted in bold) combined with Dr Amir's statements gives the impresion you are saying that MS is more often misdiagnosed than correctly diagnosed and that the majority of MS patients are being mistreated for a condition they don't have. This leaves the reader with the impression that the very existence of MS itself is doubtful in your mind and that spinal misalignement is far more likely a cause for the myriad of symptoms known collectively as MS.
Please read this article. It is very long and needs dedication to understand. Then try and show me where your hypothesis is correct and where this hugely knowledgeable people have gone wrong. Their finding is that MS is due physical asymmetries much like Dr Amir has been saying for more than 12 years. His contentions have now been objectively supported.
http://www.fonar.com/news/100511.htm
Are you now saying that MS IS in fact a neurological disease of the Central Nervous System caused by an auto-immune disorder and NOT a spinal misalignemt after all?
No I am saying that a huge number of patients have been misdiagnosed as MS patients when their symptoms have been due to bodily asymmetries as proven beyond doubt by Dr Amir.
That a handful of people may have a completely DIFFERENT condition called TMJ (teromandibular joint disorder) and would therefore benefit from seeing an orthodontist? In which case why don't you go and talk about it on the TMJ boards as THAT condition is clearly NOT MS.
This forum is for MS patients. When they have objectively read all that is here many will probably move over to the TMD forums as per your very wise suggestion.
Please read this article. It is very long and needs dedication to understand. Then try and show me where your hypothesis is correct and where this hugely knowledgeable people have gone wrong. Their finding is that MS is due physical asymmetries much like Dr Amir has been saying for more than 12 years. His contentions have now been objectively supported.
http://www.fonar.com/news/100511.htm
Are you now saying that MS IS in fact a neurological disease of the Central Nervous System caused by an auto-immune disorder and NOT a spinal misalignemt after all?
No I am saying that a huge number of patients have been misdiagnosed as MS patients when their symptoms have been due to bodily asymmetries as proven beyond doubt by Dr Amir.
That a handful of people may have a completely DIFFERENT condition called TMJ (teromandibular joint disorder) and would therefore benefit from seeing an orthodontist? In which case why don't you go and talk about it on the TMJ boards as THAT condition is clearly NOT MS.
This forum is for MS patients. When they have objectively read all that is here many will probably move over to the TMD forums as per your very wise suggestion.
04 Dec 2012 at 12:38 pm
#91 So EJC, you now appear to be saying that MS doesn’t actually exist and that people with MS have been misdiagnosed and have something else wrong with them that is not even necessarily neurological.
I stand by it. My statements do not need your approval. This is a fact that is glaringly obvious to very many patients now. I would like to ask a very simple question based on this question and your response. Why are you here right now on this forum?
I believe far too many people are being misdiagnosed.
At no point have I ever said I do not believe MS does not exist, these words have been continually put in my mouth by previous posters.
I stand by my statement that I beleive too many people are being misdiagnosed.
04 Dec 2012 at 12:39 pm
#92
I think I'm getting a picture of EJC here. He is actually trying to find any way he can to help his wife which is an admirable and understandable thing. He recognises that Dr Amir isn't helping true MS sufferers but is helping those misdiagnosed with MS but who actually have a misalignment problem instead. His wife, who does have real MS is also gaining some help from realignment, which is brilliant - any relief is obviously welcome.
But, he is heavily influenced by Dr Amir's claims and statements leading to an almost cult following approach. Dr Amir is the instigator of the dangerous and inaccurate misinformation being thrown around. He has sucked people into his little game and those people, in turn, are becoming his advocats - spreading his word. It is those words which are being bandied around as gospel but which, under scrutiny, are utter, uneducated, unsubstantiated, hogwash.
Jen (who started this post) is also a victim subscribed to spread the Amir word. (Not dismilar to JWs really - spreading the false word but utterly brainwashed into believing it's the absolute, ultimate truth.)
Luckily, we are more objective on here and better taught. We have our resident PhD Neuroscientist who only uses substantial and scrutinised evidence from the neurological field. Everyone should always take an objective approach when dealing with such matters, ensuring the road they take or preach is verified by several authentic sources. Pie in the sky claims by one practitioner should always be taken suspicially until they solidly stand up to scrutiny. This is clearly not the case with Dr Amir's statements and EJC would do well to recognise this. By all means he should do whatever he can to ensure his wife is as well as possible and he can pass on the news and the approach they take. However, to pass on Dr Amir's false, misleading and dangerous beliefs and teachings as fact is preposterous. Let's stop here.
But, he is heavily influenced by Dr Amir's claims and statements leading to an almost cult following approach. Dr Amir is the instigator of the dangerous and inaccurate misinformation being thrown around. He has sucked people into his little game and those people, in turn, are becoming his advocats - spreading his word. It is those words which are being bandied around as gospel but which, under scrutiny, are utter, uneducated, unsubstantiated, hogwash.
Jen (who started this post) is also a victim subscribed to spread the Amir word. (Not dismilar to JWs really - spreading the false word but utterly brainwashed into believing it's the absolute, ultimate truth.)
Luckily, we are more objective on here and better taught. We have our resident PhD Neuroscientist who only uses substantial and scrutinised evidence from the neurological field. Everyone should always take an objective approach when dealing with such matters, ensuring the road they take or preach is verified by several authentic sources. Pie in the sky claims by one practitioner should always be taken suspicially until they solidly stand up to scrutiny. This is clearly not the case with Dr Amir's statements and EJC would do well to recognise this. By all means he should do whatever he can to ensure his wife is as well as possible and he can pass on the news and the approach they take. However, to pass on Dr Amir's false, misleading and dangerous beliefs and teachings as fact is preposterous. Let's stop here.
04 Dec 2012 at 12:45 pm
#93 So EJC, you now appear to be saying that MS doesn’t actually exist and that people with MS have been misdiagnosed and have something else wrong with them that is not even necessarily neurological.
I stand by it. My statements do not need your approval. This is a fact that is glaringly obvious to very many patients now. I would like to ask a very simple question based on this question and your response. Why are you here right now on this forum?
Samantha, I love it!!! I think your question says it all!
Belinda
04 Dec 2012 at 12:47 pm
#94
EJC, responding to Moyna, asked
"Is a cardiac surgeon more qualified than a Neurologist to comment on what is and what isn't MS or what is and what isn't suitable treatment?"
Readers can easily see that this is not what Moyna said. She did cite a surgeon who had been given the treatment for CCSVI.
She also referred to an eye surgeon. Given the number of nerve cells in a single human eyeball (more than 150 million), I would expect an eye surgeon to have an excellent knowledge of that part of the nervous system - which does, of course, include parts of the brain.
EJC also says:
How is you seem to know - yet the Copaxone nurse, the Nuero and even Teva can't answer these questions after Emma having taken the drug for over a year?
So tell me how it works, what exactly does it do? I can't seem to get a straight answer to that question.
I note that there has been reference to both a "Neurosurgeon" and a "Neurologist" in relation to Emma's treatment. Anyone who does not know the distinction between the two specialities is unable to grasp a long technical explanation involving the presumed effects of Copaxone on certain T-cells (let alone the difference between the different types of T-cell). I would also suggest that demanding answers that one is unable to comprehend is not the way to establish good relations with anyone.
I also note that in a different thread, there is an uncomplimentary reference to "Emma's Neurologist" at the East Surrey Hospital, along with a comment that the man has 500,000 patients. Really?!!!
Since the population of Surrey is given as 1.1 million (by Surrey County Council), that one person has half the population as patients is stretching credulity a great deal. One wonders what the neurology people at Frimley Park, and the Royal at Guildford would say to this claim.
Turning to the treatment offered by "Dr" Amir ...
I note that he studied the "Atlas Balance" approach in Germany. So I looked up Atlas Balance - amongst the many things that this "treatment" is supposed to cure is Dyslexia. Now I know that some people deny that Dyslexia exists, while others consider that it is a problem with the "feature detectors" that are created by the network of nerve cells in the eyes. Since the pathway from eye to brain does not go anywhere near the spine/neck/jaw, I regard this as suspicious. I see that the same claim is made in the middle of the long, long list of conditions that "Dr" Amir claims to have treated satisfactorily.
What I can state, with total confidence, is that "Dr" Amir would have great trouble trying to attach any of his devices to me - and hence that he would not be able to alter the alignment of my jaw.
Geoff
"Is a cardiac surgeon more qualified than a Neurologist to comment on what is and what isn't MS or what is and what isn't suitable treatment?"
Readers can easily see that this is not what Moyna said. She did cite a surgeon who had been given the treatment for CCSVI.
She also referred to an eye surgeon. Given the number of nerve cells in a single human eyeball (more than 150 million), I would expect an eye surgeon to have an excellent knowledge of that part of the nervous system - which does, of course, include parts of the brain.
EJC also says:
How is you seem to know - yet the Copaxone nurse, the Nuero and even Teva can't answer these questions after Emma having taken the drug for over a year?
So tell me how it works, what exactly does it do? I can't seem to get a straight answer to that question.
I note that there has been reference to both a "Neurosurgeon" and a "Neurologist" in relation to Emma's treatment. Anyone who does not know the distinction between the two specialities is unable to grasp a long technical explanation involving the presumed effects of Copaxone on certain T-cells (let alone the difference between the different types of T-cell). I would also suggest that demanding answers that one is unable to comprehend is not the way to establish good relations with anyone.
I also note that in a different thread, there is an uncomplimentary reference to "Emma's Neurologist" at the East Surrey Hospital, along with a comment that the man has 500,000 patients. Really?!!!
Since the population of Surrey is given as 1.1 million (by Surrey County Council), that one person has half the population as patients is stretching credulity a great deal. One wonders what the neurology people at Frimley Park, and the Royal at Guildford would say to this claim.
Turning to the treatment offered by "Dr" Amir ...
I note that he studied the "Atlas Balance" approach in Germany. So I looked up Atlas Balance - amongst the many things that this "treatment" is supposed to cure is Dyslexia. Now I know that some people deny that Dyslexia exists, while others consider that it is a problem with the "feature detectors" that are created by the network of nerve cells in the eyes. Since the pathway from eye to brain does not go anywhere near the spine/neck/jaw, I regard this as suspicious. I see that the same claim is made in the middle of the long, long list of conditions that "Dr" Amir claims to have treated satisfactorily.
What I can state, with total confidence, is that "Dr" Amir would have great trouble trying to attach any of his devices to me - and hence that he would not be able to alter the alignment of my jaw.
Geoff
04 Dec 2012 at 4:18 pm
#95
"Please read this article. It is very long and needs dedication to understand. Then try and show me where your hypothesis is correct and where this hugely knowledgeable people have gone wrong. Their finding is that MS is due physical asymmetries much like Dr Amir has been saying for more than 12 years. His contentions have now been objectively supported.
http://www.fonar.com/news/100511.htm"
The link takes us to an article about an article. It is not very long and only contains the bare information which is actually very easy to understand if you have the right knowledge. To read the whole article (which is long), you need to follow the link at the bottom. (Which I have done.)
I'm not going to go into the issues I have with this study as it would be much too technical and should really be directed at the authors, however (and you will have to take my word for it) there is nothing in this article to remotely support the proposal that MS lesions are in fact calcification or that MS lesions do not cause neural damage or that MS lesions do not cause symptoms.
The authors also do not say that MS is due to physical assymetries. They say that trauma may play a role in the development of MS (although their logic is not properly explained or especially supported with their own data). The rest of the discussion reads much like a sales pitch for their patented scanner to be used to monitor flow in CCSVI treatment.
The paper was published more than a year ago. In that time, it has been cited only once, in a review paper regarding CCSVI.
I guess the MS research community didn't get terribly excited by it. I wonder why?
Geoff, if you are reading this, you really must go and have a look at the stats in the paper. You will love it (not) :-)
http://www.fonar.com/news/100511.htm"
The link takes us to an article about an article. It is not very long and only contains the bare information which is actually very easy to understand if you have the right knowledge. To read the whole article (which is long), you need to follow the link at the bottom. (Which I have done.)
I'm not going to go into the issues I have with this study as it would be much too technical and should really be directed at the authors, however (and you will have to take my word for it) there is nothing in this article to remotely support the proposal that MS lesions are in fact calcification or that MS lesions do not cause neural damage or that MS lesions do not cause symptoms.
The authors also do not say that MS is due to physical assymetries. They say that trauma may play a role in the development of MS (although their logic is not properly explained or especially supported with their own data). The rest of the discussion reads much like a sales pitch for their patented scanner to be used to monitor flow in CCSVI treatment.
The paper was published more than a year ago. In that time, it has been cited only once, in a review paper regarding CCSVI.
I guess the MS research community didn't get terribly excited by it. I wonder why?
Geoff, if you are reading this, you really must go and have a look at the stats in the paper. You will love it (not) :-)
04 Dec 2012 at 8:13 pm
#96
OK, Karen, I did read the whole paper.
Stat? What stats? ROTFLMAO. And this is supposed to be a scientific paper? No Way. NFW!
What I did notice was that:
a - Some of the illustrations were borrowed from other researcher's work. (Yes, they were properly acknowleged, but you would think that the guy whose company produces the scanner that is shamelessly plugged throughout the paper could have done better.
b - The time between submission and acceptance is the shortest I have ever seen - just two weeks.
One could be charitable and assume that the journal were desperately short of material for that issue (and this does not say a lot for the credibility of the journal). The other possibility does not reflect well on either the Authors or the Editor.
One could wonder how EJC came by that particular reference ... And, what does he think that it proves ...
Geoff
Stat? What stats? ROTFLMAO. And this is supposed to be a scientific paper? No Way. NFW!
What I did notice was that:
a - Some of the illustrations were borrowed from other researcher's work. (Yes, they were properly acknowleged, but you would think that the guy whose company produces the scanner that is shamelessly plugged throughout the paper could have done better.
b - The time between submission and acceptance is the shortest I have ever seen - just two weeks.
One could be charitable and assume that the journal were desperately short of material for that issue (and this does not say a lot for the credibility of the journal). The other possibility does not reflect well on either the Authors or the Editor.
One could wonder how EJC came by that particular reference ... And, what does he think that it proves ...
Geoff
04 Dec 2012 at 8:25 pm
#97
OK, Karen, I did read the whole paper.
Stat? What stats? ROTFLMAO. And this is supposed to be a scientific paper? No Way. NFW!
What I did notice was that:
a - Some of the illustrations were borrowed from other researcher's work. (Yes, they were properly acknowleged, but you would think that the guy whose company produces the scanner that is shamelessly plugged throughout the paper could have done better.
b - The time between submission and acceptance is the shortest I have ever seen - just two weeks.
One could be charitable and assume that the journal were desperately short of material for that issue (and this does not say a lot for the credibility of the journal). The other possibility does not reflect well on either the Authors or the Editor.
One could wonder how EJC came by that particular reference ... And, what does he think that it proves ...
Geoff
Thought you might enjoy it (for all the wrong reasons!!!)
Kx
04 Dec 2012 at 9:04 pm
#98
This has been an interesting ( and sometimes heated) discussion. I must admit that I cannot see how alignment could cure MS, maybe it does help with some of the symptoms after all the human body is not made up of little "boxes" everything is interlinked. However maybe thinking outside the box can lead to other discoveries - look at stomach ulcers - thought to be caused by stress and psychological disorders so I am sure to begin with the 2 scientists who discovered that it was bacterial and could be cured with antibiotics had a hard time convincing the medical fraternity.
After all my reading over the last few weeks and my chat with the neurologist who freely admits that they only know about 20% of what they should know - surely there are so many factors involved in MS that it is not one thing at all there must be so many factors that cause this monster of a disease.
After all my reading over the last few weeks and my chat with the neurologist who freely admits that they only know about 20% of what they should know - surely there are so many factors involved in MS that it is not one thing at all there must be so many factors that cause this monster of a disease.
04 Dec 2012 at 9:14 pm
#99
I have read both the link supplied by EJC and the attached paper and rolled around laughing. It read as one massive sales pitch for a very odd MRI machine which as far as I can see from numerous google searches has been bought by NO reputable hospitals or research facilities. All this machine and its associated advertising pitch appears to be doing is to try and cash in on the CCSVI market which is rapidly becoming a fizzler anyway.
As far as a rigourous scientific study goes this fails on just about every parameter.
1) The sample size is too small. 8 particiapnts? 8?????? Statistcally irrelevant.
2) Where is the control group? Without studying people without MS the whole study is totaly pointless. This so called phenomena may be totally physiologically normal.
3) And in the absence of a control group double blif=ding was impossible therefore the MRI tecnicians running the study knew that each person being studied had MS and therefore the interpretations were left open to bias.
And that destrys any validity of the results without een having to know anything about MS, MRIs or having any specialist knowledge.
If this study had really made such ground breaking studies as you sem to think it does EJC don't you think it would have made head line news i the MS comunity by now? Or are e gooing to enter into a wholediscussion on Big Paharma supresing any data that doesn't support and mediation based treatment method for MS?
Look, EJC, I am glad that your wife is feeling better for what ever reason, but please stop trying to convince people of half baked loony theories that simpy do not hold water on the slightest bit of considered thought. You are working on ideas from the lunatic fringe andwhile that may be your perogative, it is not your right to tell every body that the accepted body of science is completely wrong and that only a handful of self serving quacks have got it right.
Belinda
As far as a rigourous scientific study goes this fails on just about every parameter.
1) The sample size is too small. 8 particiapnts? 8?????? Statistcally irrelevant.
2) Where is the control group? Without studying people without MS the whole study is totaly pointless. This so called phenomena may be totally physiologically normal.
3) And in the absence of a control group double blif=ding was impossible therefore the MRI tecnicians running the study knew that each person being studied had MS and therefore the interpretations were left open to bias.
And that destrys any validity of the results without een having to know anything about MS, MRIs or having any specialist knowledge.
If this study had really made such ground breaking studies as you sem to think it does EJC don't you think it would have made head line news i the MS comunity by now? Or are e gooing to enter into a wholediscussion on Big Paharma supresing any data that doesn't support and mediation based treatment method for MS?
Look, EJC, I am glad that your wife is feeling better for what ever reason, but please stop trying to convince people of half baked loony theories that simpy do not hold water on the slightest bit of considered thought. You are working on ideas from the lunatic fringe andwhile that may be your perogative, it is not your right to tell every body that the accepted body of science is completely wrong and that only a handful of self serving quacks have got it right.
Belinda
04 Dec 2012 at 9:28 pm
#100
This has been an interesting ( and sometimes heated) discussion. I must admit that I cannot see how alignment could cure MS, maybe it does help with some of the symptoms after all the human body is not made up of little "boxes" everything is interlinked. However maybe thinking outside the box can lead to other discoveries - look at stomach ulcers - thought to be caused by stress and psychological disorders so I am sure to begin with the 2 scientists who discovered that it was bacterial and could be cured with antibiotics had a hard time convincing the medical fraternity.
After all my reading over the last few weeks and my chat with the neurologist who freely admits that they only know about 20% of what they should know - surely there are so many factors involved in MS that it is not one thing at all there must be so many factors that cause this monster of a disease.
Fundamentally this is what all the fuss is about.
Is it too much to ask that people consider other avenues than the well trodden path that leads to nothing?
I ask nothing other than people be open minded and accept that alternative theories and treatments are something that shows possible promise and hope where conventional medicine currently fails.
Helicobacter pylori is the perfect example. At the time the scientist that suggested this was the primary cause of Peptic Ulcer Disease were pilloried, almost a complete laughing a stock. How that changed as they collected their Noble prize.
What I am asking is open your mind. For 160 years the idea of MS being an Autoimmune condition has failed to be proven. Do you think it's time people started looking outside the box?
04 Dec 2012 at 10:00 pm
#101
"He has a better understanding from a neurological point of view"
Than whom?!
Here are a few absolute crackers from your own website, posted by the man himself.
"The neuralgic facial pain is always caused by TMJ dysfunction." Utter rubbish. Trigeminal neuralgia (TN) is inflammation of the trigeminal nerve. The trigeminal nerve runs from the brain stem to the head/face. A lesion anywhere along that nerve can cause TN. Of course TMJ can cause TN, but always? Categorically not.
"It is difficult to imagine antidepressants taking away "burning, aching body pain" unless off course one is drugged up into a cabbage!" No, wrong again. At a low dose, antidepressants can provide remarkable relief from burning and aching body pain as well as other types of neuropathic pain.
He gives us this cure for L'Hermitte's sign, not seeming to realise that the most common cause of L'Hermitte's sign in MS is a lesion of the spinal cord: "L’hermitte sign: Atlas and appliance treatment to correct cervical spine"
And treatment for chronic pins & needles?: "again symmetry treatment through appliances - not anticonvulsants and antidepressants!" The exclamation mark says it all really. Why would it be there unless the author had no understanding of the cause of the pins & needles and the mechanism by which meds relieve this?
"Muscle spasms and cramps: How will anti-inflammatories remove the cause? The use of anti infllammatories masks the underlying cause allowing the damage to get worse." Anti-inflammatories are not used in the treatment of MS-induced muscle spasms and cramps. This is for one very good reason: spasms and cramps (and associated spasticity) are caused by a problem with the upper motor neuron. (I wonder if the author of the quotes knows what that means?)
And if those examples weren't bad enough, here we have something that beggars belief:
"Back and Skeleton pain: This needs urgent Atlas correction and appliance therapy before it gets worse and patients start having difficulty walking." The author is suggesting that the source of mobility problems is back and skeleton pain. There is no reference to spasticity or upper motor neuron problems. There is no mention of ataxia. There is no mention of foot drop. There is no mention of motor fatigue. There is no mention of, well, of anything neurological!
Just about the only original thing that is true on the post these quotes come from is the bit at the end:
"Disclaimer : The content of this site does not represent a qualified medical opinion. You should always seek the advice of your medical practitioner or neurologist before trying any treatment you may read about on this site."
HEAR HEAR!
Than whom?!
Here are a few absolute crackers from your own website, posted by the man himself.
"The neuralgic facial pain is always caused by TMJ dysfunction." Utter rubbish. Trigeminal neuralgia (TN) is inflammation of the trigeminal nerve. The trigeminal nerve runs from the brain stem to the head/face. A lesion anywhere along that nerve can cause TN. Of course TMJ can cause TN, but always? Categorically not.
"It is difficult to imagine antidepressants taking away "burning, aching body pain" unless off course one is drugged up into a cabbage!" No, wrong again. At a low dose, antidepressants can provide remarkable relief from burning and aching body pain as well as other types of neuropathic pain.
He gives us this cure for L'Hermitte's sign, not seeming to realise that the most common cause of L'Hermitte's sign in MS is a lesion of the spinal cord: "L’hermitte sign: Atlas and appliance treatment to correct cervical spine"
And treatment for chronic pins & needles?: "again symmetry treatment through appliances - not anticonvulsants and antidepressants!" The exclamation mark says it all really. Why would it be there unless the author had no understanding of the cause of the pins & needles and the mechanism by which meds relieve this?
"Muscle spasms and cramps: How will anti-inflammatories remove the cause? The use of anti infllammatories masks the underlying cause allowing the damage to get worse." Anti-inflammatories are not used in the treatment of MS-induced muscle spasms and cramps. This is for one very good reason: spasms and cramps (and associated spasticity) are caused by a problem with the upper motor neuron. (I wonder if the author of the quotes knows what that means?)
And if those examples weren't bad enough, here we have something that beggars belief:
"Back and Skeleton pain: This needs urgent Atlas correction and appliance therapy before it gets worse and patients start having difficulty walking." The author is suggesting that the source of mobility problems is back and skeleton pain. There is no reference to spasticity or upper motor neuron problems. There is no mention of ataxia. There is no mention of foot drop. There is no mention of motor fatigue. There is no mention of, well, of anything neurological!
Just about the only original thing that is true on the post these quotes come from is the bit at the end:
"Disclaimer : The content of this site does not represent a qualified medical opinion. You should always seek the advice of your medical practitioner or neurologist before trying any treatment you may read about on this site."
HEAR HEAR!
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