01 Dec 2012 at 4:01 pm
#1
MS may be due to simple jaw problem - Seek a spinal symmetry evaluation before starting drug treatment!
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
Topics Symptoms Treatments and therapies
Follow my story here http://themsforum.org/viewtopic.php?f=9&t=6
Topics Symptoms Treatments and therapies
Moyna xxx
What do you reckon to that idea?
I am glad things are on the up for you.
luv Pollx
I reckon you are absolutely spot on Poll :-)
Karen x
The truth is that:
MS is not caused by CCSVI.
MS is not caused by any compression of veins.
MS is not caused by any skeletol misalignment (including the jaw!).
The immune system is not "doing exactly what it is supposed to do" in MS.
Your comments about DMDs and "dirty money" are built around a few, selective facts which have been grossly inflated and over generalised. The result is a statement that is pure conspiracy theory, potentially libellous and plain wrong.
Also, notwithstanding the fact that I find your suggestion that I have been the victim of a "huge money-making scam" personally offensive (I have used both Copaxone and Rebif), the hypocrisy is staggering. What reliable evidence can your "practitioner" provide to support his/her claims to have no patient with genuine MS? (I wonder what motive could possibly provoke someone to say that kind of thing?!) How much does each session cost you? How many are you going to have to have? How long will any effect last? I wonder how you heard of your "practitioner" or what qualifications in neurology he/she has? And while we're at it, how much did your CCSVI scan cost you? How much does the EH Clinic charge for the "treatment" it provides for CCSVI?
If there's any money making scam going on it's by the unethical practitioners who are convincing MS sufferers to have spine realignment etc which will never ever heal myelin damage.
Sometimes we find it best to await advice from a higher power [the web team]. They have been made aware of the posts but it will be tomorrow before they can do anything.
Liz [Moderator]
Lesions do heal. Some people with MS will also have back/neck/jaw problems which will be eased by manipulation. But 'MS' cannot be healed by realignment. Period. There will be no 'take up your mat and walk' miracle by this method. If there is, the problem was not MS.
Nobody knows what causes MS or how to heal it but it is real and it is caused by lesions on the CNS.
Giving false hope; trying to make vulnerable people spend money they can ill afford on pie in the sky 'cures' and suggesting the meds they are on are only because of money making scams only smacks of unethical ignorance. There is only one money-making scam going on here!
If you are having relief from symptoms because of this treatment, then these symptoms were not caused by MS.
Your comments about DMDs are grossly inflated. Let's take them one by one if you like.
"...how many poor people have been given an MS diagnosis, put on what are basically recycled cancer drugs which suppress or destroy the immune system and left to deteriorate." The UK actually has a woeful record on DMD prescription versus the rest of Europe and North America. From memory, at most 15% of people with MS are on DMDs in the UK :-( Leaving this to one side however, please provide evidence to show that Avonex, Rebif, Betaferon, Extavia, Copaxone, Tysabri, Gilenya and all the other DMDs in the pipeline (e.g. BG-12) are drugs previously used to treat cancer. The single link you provided later on regards alemtuzumab, although I really can't see the big deal about whether something has been previously used to treat cancer for two main reasons: many drugs are used for many conditions and alemtuzumab is incredibly effective at stopping MS. Moving on from that, please also provide evidence to show that Avonex, Rebif, Betaferon, Extavia, Copaxone, Tysabri, Gilenya and all the other DMDs in the pipeline (e.g. BG-12) are drugs that suppress or destroy the immune system. Please note that you did not state "suppress PART of the immune system". Providing evidence of that is therefore irrelevant (never mind the fact it wouldn't apply to all of them either!). Now we come to the "left to deteriorate" part. People who are prescribed DMDs have to see a neurologist at least once a year. If the DMD does not work and their condition deteriorates, they will be switched to another. Sadly, if nothing works, then all that they can receive is symptomatic relief. This ongoing monitoring and care is totally inconsistent with your point. If it is your experience then I recommend that you question everything and take charge of your own health - reading the NICE guidelines might be a good place to start.
"Take people with various symptoms with 'unknown' cause, label them MS..." Here you suggest that there is no proper diagnostic procedure for MS. I wonder if you know how many people on this forum have found it easy to get a diagnosis? Or perhaps you didn't consider that? Are you suggesting that we none of us actually have MS? That MS doesn't exist? Ultimately, in what way is this part of your statement accurate, logical or uninflated?
"use dangerous drugs, some of which cause fatal brain infections and cardiovascular problems, and give them as 'treatment." Here, you take two of the known potential side effects of two drugs (one for each btw, not both for both) and suggest that the risk is far greater than it actually is. Do you know what percentage of people on Tysabri and Gilenya have suffered with these complications? Actually, what percentage of all the people on all the DMDs have developed fatal brain infections and cardiovascular problems? Where do you state that there are no such side effects for the vast majority of people? Where do you state that there are no such potential risks with the injectable DMDs? Why have you put the word "treatment" in inverted commas, suggesting that they do not even treat MS? Please provide evidence that Tysabri and Gilenya do not treat MS, i.e. reduce relapses, reduce progression and reduce disability.
"It has never been proved that MS is an autoimmune disease, so how on earth do you develop drugs to treat it..." Linking the controversy regarding whether or not MS is an autoimmune disease to whether or not the drugs work is another manipulation of the truth. It would take too long to explain how drugs for MS are developed. Suffice it to say that MS drugs are not developed to treat an autoimmune disease; they are developed to treat MS. Most of these meds seek to reduce the immune system attacks on our central nervous systems. There is no doubt that the immune system is causing this damage and there is no doubt that it is an abnormal response. What triggers this response is the controversy. People who like to claim that MS is nothing to do with the immune system are either ignorant or have their own agenda.
"It is a huge money-making scam........ unless you are purely in the business of maintaining a stream of dirty money." Not only is this anything but "not grossly inflated", it is actually libellous. How on earth can it be a scam if the drugs work? You may well refer me to the Independent story about alemtuzumab. This is undoubtedly bad news, but in what way does it prove that alemtuzumab does not work? Are you aware of the costs of drug development? Are you aware of the success rate of new drugs? Are you aware of the millions of people who are still alive and/or healthy today because of the same companies that you accuse? Tell me please, what percentage of pharmaceutical capital investment is profit? Now tell me what the equivalent number is for other businesses? Might it surprise you to know that pharmaceutical companies are not at the top of the list? I actually looked at this earlier this year: the pharmaceutical industry came sixth (of 15), behind Personal Goods, Aerospace & Defence, Software & PC Services, Mining and Electricity. Not that any of this addresses the "dirty" part of your comment. How is this the truth?
I'm afraid my point about hypocrisy must have been too subtle. You claim that drug companies are money making scammers.
Just how much have you spent on treatment with an orthodontist who, you say, claims to have never had a patient with a true MS diagnosis and who appears, from what you have said, to be able to cure MS symptoms if you'll just pay him £100 a session for up to two years as well as whatever "dental appliances" he prescribes?
And yet MS is not caused by skeletal misalignment. (Nothing arrogant about this statement btw. It's the simple truth. Just like the fact that the Earth is round.)
Finally, the answer to "If indeed it is the case that lesions cause permanent damage to nerve pathways, then why do these symptoms disappear when the asymmetries are corrected?" is in the question, helped along by a lack of knowledge about neurology and neuroscience. It may become clearer if you read some of the replies I have done on here about how the brain deals with demyelination. Although I would also refer you to this rather excellent youtube video with regard to the timing (very funny, but also very true): http://www.youtube.com/watch?v=yfRVCaA5o18
Nothing wrong with trying to help. A lot wrong with providing nothing but inaccurate and grossly misleading beliefs dressed up as facts that do not stand up to even superficial scrutiny.
Jencor, some basic anatomy is needed here. Specifically the difference between the cental nervous system and the peripheral nervous sytem.
The central nervouse system is made up of the brain, the spinal cord and the optic nerves. If you had skeletal mialignements severe enough to be causing compression of the spinal cord you would be a candidate for immediate emergency neurosurgery toprevent you from becoming either a quadriplegic or a paraplegic. I know, I did have 3 lef=vels of severe misalignment is=n my neck as a result of an accident where my spinal cord was severely impinged and I was millimetres away from being a C3 quad.
However if the Atlas joint ( the top most vertebrae benath the skull) was severely misaligned to the point of causing spinal cord compression, it would be a catastrophic injury probably causing instantaneous death due to the impact on the respiratory function.
Any other nerve impingement caused by misalignment in the spinal area will affect the peripheral nervous system. Nerves branch out from the spinal cord and exit via holes in the vertebrae called foramen. If the vertebrae are misaligned or if a disc has collapsed, these nerves can get trapped and pinched causing peripheral nerve damage, which can result in pins and needles and numbness and weakness.
The big difference though is that peripheral nerve damage follows very clear lines of damage correlating to the particular nerve affected. Central nervous system damage is more random and wide spread.
Also in the jaw you can most definitely get pain and discomfort from a condition called Temporomandibular joint (TMJ) which can mimic Trigeminal Neuralgia and can also cause dizziness and headaches. This is a result of tension in the jaw or teeth grinding and is definitely successfully treated by orthodontists.
There is no way that minor misalignments in the spinal or skeletal system can impact on the CNS and certainly it is physically impossible for these misalignments to cause lesions in your brain or to cause Optic Neuritis.
The most that some minor misalignments could cause is some peripheral nerve damage which is a far cry from the symptoms that those of us diagnosed with MS struggle with.
I am glad you are seeing some improvement at present. That is fantastic and it is quite possible that after 22 years you have developed some secondary skeletal problems caused by postural imbalances due to difficulties walking and gait abnormalities and lack of mobility. These could well respond positively to some forms of manipulative treatments as could any jaw work if you have been carrying a lot of stress in your jaw as many people do.
But to say that MS does not exist, or to quote your practitioner as saying that “he is yet to see a genuine MS patient. Every one he has seen has cranio-dental and skeletal asymmetries which, when corrected, make 'MS' symptoms disappear” Is just irresponsible and makes you look both ignorant and foolish.
Like wise your statements about the drug treatments are dangerously ignorant and foolish. I have been on one of those so-called “recycled cancer treatments” and it changed the pattern of my MS from monthly back-to-back relapses to my having over a year of stability. Did you know that it has now been shown that people who are on DMDs have a longer life span than people with MS who don’t take DMDs?
So glad as I said that you are seeing some improvements. That is great but your theories behind why that is happening are dangerously ignorant and frankly the practioner you are seeing is behaving in an extremely unethical manner.
Belinda
I have problems with my cervical spinal cord causing problems. First neuro has suggested that it is radiation damage from treatment I had 22 years ago. The second neuro thinks MS although I as I only have 1 lesion and negative LP he cant diagnose MS. Another doc thinks I had an attack of ADEM 4 years ago, when problems kind of started. Anyway I did have l'hermittes 6 months after the radiation treatment many years ago. This then raised its head 4 years ago. Anyway I generally think from my experience that neurology is a guessing game. The jaw thing does ring recent bells though. I wake up most nights with aching jaws and the feeling that a pen is being screwed into my ears. A few years ago when this started my GP said it was dental. My dentist cleared out all of my fillings. I had two crowns with decay under them. Anyway they were all replaced with white fillings. This still did not fix the problem. I was then fitted with an anti grinding gum sheild and this has not helped either. Most nights I have to take strong pain killers to get my through the night.
The questions I want to ask you did you have MRIs showing lesions ? Have the lesions repaired themselves after your recent treatments? Have you had a lumbar puncture? Lesions on the nervous system can be caused by different things. I bet there are people who have been given an MS diagnosis who dont actually have it. A know a man who thought he had MS for several years. It turned out he had pernicious anemia!
I am about to undergo a treatment that has been discovered for radiation myleopathy that has had some success in the USA. Although it is a drug used here for bowel cancer I have to pay £5000 to have it as it is not a recognised treatment for RM in this country. I have decided to go ahead even though only 1 out of my 3 neuros think that is RM that I have!
By the way I had the CCSVI screening and my veins were clear.
Love Moyna
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
I am glad that you posted your comments because I think I might give it a go if my planned treatment fails to work. The Essential Health Clinic seemed to say it showed some success. I can see that you were innocently trying to let people know the joy you were getting from your treatment and you wanted others to try it too. I too on Saturday upset folk with a term I used in the flu-jab post (every day forum) and was initially very upset from a particular comment. The person took completely the wrong interpretation to my comment. Thankfully it all resolved itself very well but I now realise to be very careful in what I say.
I would love to hear that your progress to better health continues to improve. Please send me a private message any time as I would be keen to hear.
Love Moyna x
Shouted down or challenged?
Personally I am grateful to people who share their knowledge to challenge some of the misleading and dangerous twaddle that gets posted on here.
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
This thread was posted on the New Diagnosis and Before Diagnosis forum; a forum largely frequented by people who have yet to develop a good understanding of MS, some of whom who may be desperate enough to be willing to spend money on anything made to sound like it might help.
The title encouraged us to get a spinal symmetry evaluation before we started drug treatment. What do you reckon the likelihood is that the orthodontist wouldn't find anything to treat - at £100 a session + "appliances"? (Because sure as fate he will be the only person "good" or "knowledgeable" enough to be able to do it properly!) So then the unwitting are dragged into an unproven treatment which, by the original poster's own admittance, can take 2 years - and we are to do this before we start drug treatment? Do you know just how much damage MS can cause in just 2 years? Did you know that DMDs are most effective at preventing disability if started in the first 2 years?
If that isn't irresponsible / bad enough, the replies then go on to include misleading and totally incorrect information and utter scaremongering. In what way is telling people that DMDs are a scam and that they destroy our immune systems, cause fatal side effects, etc, "just" letting us know about something that has helped them as an individual / not wanting to cause offense / "innocent", etc. In what way is suggesting that DMDs are bad for us just trying to help?
I did not take anything that the original poster said "in the wrong way". This was not a case of misinterpretation! How else would the words "money making scam", "dirty money", "cancer", etc, be interpreted?!
Then the original poster goes on to tell us to take control of our own health and we'll "be fine". How many of us are qualified in neurology? How many of us can read and fully understand original research papers? How many of us have medical degrees? How many of us can prescribe our own meds? How many of us actually have the experience and knowledge to manage our own treatment on our own? More importantly, how many of us would "be fine" if we ditched our DMDs and took up with an orthodontist in charge of our treatment?!
Some of you want to allow this sort of thing to go unchallenged? Then you're using the wrong forum.
If you take what Karen said:
"I did not take anything that the original poster said "in the wrong way". This was not a case of misinterpretation! How else would the words "money making scam", "dirty money", "cancer", etc, be interpreted?!"
I think that my answer would have the word "shill" in it.
A lot of people here have differing views, and offer differing opinions - they do not push out their biases as facts.
If all the people who claim to have discovered the real cause of MS, and those who claim to have discovered a cure for MS, were all put into one room, I doubt if any two of them would agree. This would suggest that most of them are just plain wrong - it might even suggest that all of them were just plain wrong.
Geoff
Well said
Belinda
Just makes me think of all the people who struggle and survive with their MS, and all the MSers who have gone before us, and all the scientists all over the world working away like mad to find new treatments... and all the fundraising to pay for all that hard work... and yet someone can still come out of nowhere with some crazy unresearched, unscientific, unethical nonsense and convince people it's true!
It's a mad mad mad mad world...
Pat x
Well, the OP wrote:
So I did. Is it not just a little strange that a forum calling itself themsforum.org should be devoted to Body Assymmetry?
So then I wondered just who might be responsible for this forum/website, and when I clicked on the link "Our Team", I was taken to a page that required membership before disclosing just who was responsible. Funny, that. What I did find was a disclaimer that reads, inter alia:
"The content of this site does not represent a qualified medical opinion . ...
Do we assume form this that the Dr Amir who features prominently in the forum, and offers the treatment, is not qualified? Certainly, another forum that seems to carry mixed views, the qualifications for Mr M Amir do not seem to warrant the title of Doctor - but of course, there are quite a lot of surgeons (as Dr/Mr Amir certainly is) who do not use that title either (and discourage its use). Either way, I do not see anything that would suggest that he is qualified to offer a formal opinion on matters neurological - which might be what the disclaimer is all about.
Perhaps there is a good explanation. Let's hear it ... ...
Geoff
Dear Sir/Madam,
I write to ask the reasoning behind your recommendation of the MS Society as a place for MS patients to acquire information about the disease. They do not impart any information that is not linked with its biggest sponsors, the pharmaceutical industry. Non-drug therapies are not only ignored but actively censored from being viewed at all.
I hope you will find time to peruse the following document which highlights the massive failings of a society that is supposed to make the care and education of patients a priority.
http://tinyurl.com/8e4odth
The social networks that have been provided by the MS Society are not an impartial place to go for information about treatments for MS. The following post was removed from MS Society Facebook within an hour.
Jenny Cornell
posted to
MS Society UK
4th October 2012 16:21 (2 seconds ago) near London
I have started an unlikely but amazing treatment which has made many of my MS symptoms disappear completely! I have been seeing a dentist specialising in cranio-dental and skeletal symmetry since June. I was found to have asymmetries in my teeth, jaw, atlas and pelvis so I have been wearing various dental appliances (braces) which are moving my teeth and jaw into the correct position. See the graphs for an indication of my progress so far and click on the links for more information about this life-changing treatment.
http://www.atlantotec.com/en/fundamenta ... agus-nerve
http://www.atlantotec.com/en/disorders/ ... h-grindin
No explanation was given for the deletion of my post. Many others have been censored and deleted for talking about therapies for MS that are not drug-based. People with diseases like MS deserve to know the truth about all the options for treatment available to them so that they can make informed decisions.
I would therefore like to request that MS Society are not promoted further by you because they do not have the patients' best interests at heart.
Yours sincerely
Jenny Cornell
FFS!!!
Is it not worth asking pertinent questions and forming research into other avenues?
Utter hogwash. Your link is as fanciful as anything I've ever read - no pictures indeed - maybe because 'Emma' doesn't exist! Emma Jane Cornell = EJC. Not even imaginative!
The link I provided to Thisisms will clearly show 2+ years of posts. I chose to use the same moniker so I can clearly be traced rather than remain anonymous (where's the irony smiley?).
The link I provided documents in a diary form Emma's ups and downs.
Feel free to check with admin that my initials coincide perfectly with the genuine email address I used to complete my registration.
I give them premission to discuss this matter with you openly, just incase they feel they are breaching data protection in doing so.
I have nothing to hide, why are so many people so frightened when an alternative treatment is suggested?
Would it not be more prudent to embrace those willing to take it on rather than berate them for trying?
RA and Fibromyalgia,
Irritable Bowel Syndrome
Crohns,
Coeliac disease,
Migraines, Headaches,
Eating Disorders
Depression,
OCD,
Bi-polar Disorder,
Sleep Apnoea
Schizophrenia,
Hearing Loss/ Tinnitus, and..
Infertility.
I'd go on, but this level of quackery is about as bad as it gets.
Some of the rhetoric about how disgusting the MSS is, how the NHS is funded by Big Pharma and its toxic drugs, which just exist to keep people ill, is shocking and sickening.
No one cares - only 'real' doctors like Dr Amir, who will cure almost anything with his orthodontic therapies. Now he cares...about your bank balance. Will there be enough to pay him? No pay? No treatment, no 'cure'.
Yes, it's anoned - he could be litigious. Anyone who makes that much money from sick people is almost certain to be on the phone to his lawyer.
In the awful 15 years that Emma has had "MS" this treatment is the only one that has made a substantial and noticeable difference to her quality of life.
Why would you consider it so offensive that I chose to share that information publicly with other sufferers?
Emma completes a blind questionnaire periodically and the results are documented and produced in pictoral form as follows:
http://themsforum.org/download/file.php?id=21&mode=view
Emma has an MS diagnosis, Relapse remitting. Complete with MRI's the lot.
She also has a Neurologist who sits in front of her and says, "We don't understand MS, we don't know what causes it and there is no known cure - would you like to take these drugs they may help you with the symptoms".
I call you a cynic.
Forgive me if I chose to look elsewhere.
Your writing style and punctuation is incredibly similar to "Anonymous" do you find that odd too?
I'm not concerned. What you choose to spend your money on is entirely up to you. Is Emma still well after her Venoplasty in Glasgow?
The problem is, that Dr Amir is a quack. He claims that all his patients with MS, don't have MS at all. How does he know? Does he have their medical history? Does he carry out MRI scans? Is he a neurologist? Does he actually know which part of the brain does what? Or the spine?
What about oligoclonal bands? EB virus? How on earth is that linked to orthodentistry?
His 'science' is shockingly bad. I'm not a scientist and I can see that his ideas about neurology are wrong.
I should pick up on this comment actually.
Emma only started TMJ treatment in Decemeber 2011, we had never heard of it before that point in time.
In Decmeber 2010 she had a CCSVI procedure, which is also very well documented on thisisMS.
Prior to that she was taking Copaxone.
If you are going to public try and debunck people at least take a moment to get things atraight before firing off a salvo.
I get it that you don't like anything other than mainstream theory, the thing is, many other people might actually like to read the information I post and ofrm thier own conclusion. Who are you to speak for them?
I am not the OP, I chose to join this thread as I dissliked the agressive nature of some of the replies.
I'm not forcing anyone to see a TMJ specialist I'm simply publicly airing the journey of my long suffering wife and her battle with the misunderstood ailment currently labelled MS.
Who are you to say I am wrong?
Without a current definitive understanding of the condition how do you know I am wrong?
You can follow Emma's experience of CCSVI treatment in the following thread, start to finish, I couldn't possibly compact all that information into a single post:-
http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency...
So you're not a specialist or a doctor but you know this is wrong?
What exactly do you know is wrong?
Emma is fortunate that she has a GP who is open minded and willing to read about alternative therapy and consider the benefit it offers. In fact without prompting he arrange £2000 of funding towards Emmas CCSVI procedure from a private fund set up for tis very thing, we were extremely greatful.
The GP has become very interested in Emma's since the TMJ treatment started particularly the complete eradication of neuralgia and vast improvement in the level of fatigue.
It was this interest that lead me to document Emma's course of treatment on a monthly basis.