Thursday 31 October 2013

Vibrating/buzzing experiences

Has anyone else experienced vibrating and buzzing from within?
Author
Post
08 Sep 2012 at 10:12AM
I was just wondering if anyone shares this odd internal vibrating / buzzing feeling in the limbs? Ive been "vibrating" for about a week now - sometimes it almost feels as though Im shaking (though outwardly Im not). I feel like I have a mobile phone vibrating inside me.  Has anyone else perhaps experienced this?
08 Sep 2012 at 10:27AM
Hi Caro, I'm afraid so I call it Blackberry on vibrate.
I've been off work since March with an instance and diagnosis of Transverse Myelitis, followed by what I think was another event in July.
I have only had the vibrate mode since July...sometimes it's in my core/trunk and sometimes its in my head.
Its usually more pronounced when I'm in bed I have no idea why, and my husband says that I don't vibrate.........you know it would be funny if I wasn't so sick of all the weird sensations.
I am due to get the results of a recent MRI in October so I will keep you posted.
Gillian
Val
08 Sep 2012 at 11:15AM
Yes, more or less all the time, to some degree.  Just another delightful symptom.

Val
08 Sep 2012 at 11:50AM
I get this a lot as well. For me it's worst when it's in my face, but luckily that symptom is not one that's stayed with me for a long period of time. I do find you get some weird looks if you try to explain it to someone who's never experienced it though!
08 Sep 2012 at 12:15PM
I get it intermittently, it feels like a bumble bee, it scared me at first.
F.
08 Sep 2012 at 12:16PM
Well Im glad Im not the only one but sorry you have to share this experience. Gillian, how did they diagnose transverse myelitis if I may ask? Is the MRI in Oct for the TM or MS? I really hope you feel better soon.
In the last week I keep feeling like Im really buzzing, sometimes its very intense, sometimes it almost goes away, today its really strong and making me feel kind of dizzy because Im just on vibrate all the time. At times it also makes me feel shaky too (like when you havent eaten enough and the blood sugar levels go down - except I feel that way whether Ive just eaten or not). And yes Gillian I also feel it strongest in bed but also when Im sitting at my desk working or walking about...


08 Sep 2012 at 1:53PM
Hi Caro, there seems to be a link between TM which is inflammation of the spinal cord and MS.
There have been some brilliant posts on the subject...if you put Transverse Myelitis in the search box they are well worth a read.
I have tried not to focus on the odds of a one off bout of TM becoming MS. Unfortunately the TM really knocked me about and I lost a lot of mobility and became housebound for a while. As I was recovering I felt I may have had relapse and went back to the neurologist who ordered fresh MRI's as I had new symptoms. My concern is that the TM becomes MS.
08 Sep 2012 at 2:55PM
hi caro1
i had 2 emg test first 1 showed nerve damage
im still waiting for second results and i have not been dignosed yet im just serching for clues on what i got
 i had mri on my neck and back that came back normal
hope you feel ok hugs to you
08 Sep 2012 at 3:03PM
Yep, I get it too, especially when tired or stressed. After my (not so) pleasant morning, I'm buzzing and shaking away nicely in just about every part of my body!
It never ceases to amaze me that other people can't see it!
Karen x
08 Sep 2012 at 3:14PM
Hi caro
Yep I get it although thankfully seems to have gone for now. I described it to neuro as having a mobile phone on vibrate implanted as well! Just another symptom he told me...maybe we could all set up a BT exchange! Lol
Mish x
08 Sep 2012 at 3:32PM
Thank you all for answering and for your sympathy. It is nice to know Im not completely crazy but Im sorry to hear so many of you are buzzing and vibrating too. Whilst it doesnt hurt (me) it is rather unnerving and uncomfortable. Sometimes a specific body part buzzes briefly but at the moment i just feel like my whole body is kind of vibrating quietly from within. No one can see or feel it, just me (can feel it).
Gillian, I will look up TM! Cant believe you have to wait till Oct for an MRI by a suspected TM relapse! I would have thought they would want to do that immediately.
Rizzo, Im sorry you are also buzzing and shaking today. When you say shaking do you mean like I described it above (as if you hadnt eaten and blood sugar was low) or do you mean visibly shaking?
Thanks for answering my questions :)
Caro
08 Sep 2012 at 4:04PM
I guess a bit of both Caro. I have visible-to-others tremor which is most noticeable in my hands but also affects other bits of me. It varies day to day though and is worse when I am tired or stressed. The internal, invisible shaking feels like I'm shaking - like my insides are moving in tiny jerks, back and forward, up and down, in and out, in random directions. When it's mild/moderate, it does feel like low blood sugar - good comparison :-) When it's at its worse, it feels like there's a volcano building up to erupt and I know that my head moves a bit when it's like this although most people probably wouldn't notice. Then we have the muscle twitches and jerks to add on top - they are very visible, although I can often disguise them by crossing/uncrossing/moving my legs/arms.
Tbh, I'm used to it all now so it sounds very much worse than it is!
Kx

08 Sep 2012 at 4:32PM
Thanks Rizzo for such a detailed answer re shaking :)
So you also had twitches. I have had periods of intense twitching but i was never sure if it had anything to do with the other symptoms. I had an emg but whilst doing it the neuro kept asking if I had a twitch at that moment so he could stick  needle in that part of me and of course for the 5 minutes the emg lasted I didnt have any twitches which made me feel that you need to be twitching in that moment for the emg to really evaluate you.  He was unnerved by the twitches because I had such strong reflexes that there was a "self limiting clonus" but after the emg brought no results the twitching was more or less dismissed and I just got used to them when they came.
Re shaking. It does really feel the same as if Im late for lunch and am slightly hypoglycemic.
Have you had these vibrating / buzzing / twitching symptoms from the start of noticing something wasnt right?
Best wishes,
Caro :)

08 Sep 2012 at 5:20PM
hi caro1
i new bloga on this site
i do get twiches in most of my body when i had emg i had couple twitchs but i dont think that matters because i told him who done the test just matter waiting to see nuro for my results
best wishes to you

08 Sep 2012 at 5:27PM
Hi Caro1
well i get the vibrating feeling when doing anything my legs feel like there buzzing
The first time i ever experienced this it was in my lower body parts i made a joke about it to the Dr saying i dont need Ann Summers oooops .... just every time i had been to the toilet and wiped myself it was buzzing now its just my legs when i am walking they buzz

Mandyx

08 Sep 2012 at 7:23PM
Yep me too. Always to lesser or greater degree in legs, and often in rest of body... esp torso... when tired or stressed.
I was in a shop with wooden floorboards and a huge chest freezer. Standing next to it the floor was vibrating like mad... that's the feeling I get. Hard to explain to other people but I suppose standing next to a washing machine when spinning is also like it.
Believe it or not you get used to it in time.
Pat x
09 Sep 2012 at 9:41AM
Hi,
Yes, I get this all the time....very hard to explain to people. I feel like I'm constantly 'moving' inside. A bit like electricity going through my body...or something being sucked up a straw in my legs....(weird explanation I know). Sometimes buzzing too.
Very strange...sometimes I feel like I'm going a bit mad...........

Wendyx
09 Sep 2012 at 9:44AM
Hi Caro
I get this invisible shaking and it amazes me that people cannot see it.. it's horrible and makes me feel quite weak.  I also get the twitches/jerks that people can see. I hate these as alway.s feel really embarrassed when Im out.
Paula xx
09 Sep 2012 at 1:47PM
Well I am definitely not the only one who feels she is vibrating then :)  Thanks to everyone for answering !
09 Sep 2012 at 3:52PM
I get it as well. I sometimes find myself checking I don't have my mobile in my pocket because that's what it feels like. I also get it in my chest like something is in my heart.
It's a very odd feeling.
X
16 Sep 2012 at 11:12AM
yep i get buzzing in my feet mainly, but it can move around. its not the worst symptom in the world for me, but its a disturbing one for sure!
xx
16 Sep 2012 at 11:18AM
In the last few months I have noticed a buzzing or even fizzing feeling on my feet, particularly my right one. It is very odd and I'm trying to get used to it.
Teresa xx
16 Sep 2012 at 5:01PM
Yep, in my feet, up my legs to half way up the thighs varying in intensity but always there and often in the torso too when at my tiredest. It's been there constantly since March and is irritating as hell. Muscle twitches every now and then too.
Very weird this neuro stuff crying1
16 Sep 2012 at 5:15PM
Both of my hands tingle with pins and needles and have been like this constantly forthe last 15years lately I've noticed a vibrating feeling and what you describe is what I'm going through.
31 Oct 2013 at 1:59PM (new)
My back starts to vibrate when I have been for a walk. The vibrations all started mid August, six months after my CIS.  I went on an hour long bus ride on a bone shaker bus and sat above the rear wheels of the bus. The bus vibrations seemed to kick of my body vibrations. Now I avoid long bus journeys and don't sit over the bus wheels.  The vibrations started in my lower back, then a few weeks later to my inner thighs and now in my mid back. Its not painfull just a sensation.
31 Oct 2013 at 2:59PM (new)
I get vibrations too. Inside my chest and stomach and down my left arm and leg. Palm of my left hand and base of my left foot

Wednesday 30 October 2013

Candida and vitamin b12

Candida and Vitamin b12

Candida and Vitamin b12



No matter how well we try to take care of our families and ourselves, it’s almost a guarantee that we’re going to be deficient in one or more vitamins or minerals.
This could be why the vitamin industry is one of the most lucrative.
Busy lifestyles hinder us from eating as well as we should, the result we’re missing many nutrients our bodies require.
For people with chronic candidiasis, one of the nutrients they may need more of is vitamin B12.
How do you become deficient in vitamins? Normally we have plenty of magnesium in our systems, but it is adversely affected when our bodies become acidic.
Having an acidic system is common in those who have too much Candida in their bodies. You can find tests to measure the ph level in your bloodstream by testing either your urine or saliva.
The optimum ph level is 7.365. Levels above 7.8 or below 6.8 can result in death, so the body does everything it can to maintain that 7.365 level.
So how do candida and vitamin b12 work together?
Vitamin B12 is another vitamin that people with Candida are deficient in. Cobalamin, or Vitamin B12, is produced in the intestines by the good bacteria that are there. Having too much Candida causes a reduction in the good bacteria and thus the amount of Vitamin B12 at our disposal.
Vitamin B12 is a water-soluble compound that, unlike other B vitamins which have to be replaced each day, can be stored in the liver and kidneys. It is necessary for proper digestion and absorption of foods.
It is also important to help the body metabolize carbohydrates and fats. Too little Vitamin B12 can weaken your immune system.
Since a weakened immune system is one of the problems associated with Candida, you can increase your body’s immune response by increasing how much Vitamin B12 you consume.
As the Candida in your body increases, your immune response is reduced. This can easily increase your risk of developing a yeast infection.
Symptoms you may expect to have with a lack of Vitamin B12 include:



• Headaches
• Reduced coordination
• Pain and difficulty walking
• Shortness of breath
• Heart palpitations
Choosing a diet rich in Vitamin B12, or taking supplements, can improve how your body deals with a yeast infection.
You can also reduce Candida by eliminating refined sugars from your diet, reducing the number of carbohydrates and their type that you eat, and avoiding foods with yeast in them.
If you suffer from bouts of Candida, you may want to consider the possibility that you have a vitamin deficiency. This may be an explanation for some of the symptoms you’ve been experiencing.
Candida and vitamin b12 together can help you cure candidiasis naturally. Vitamin B12 is important for your health, so taking supplements or eating foods rich in this vitamin can be enough to help you get a handle on the Candida once and for all.

p2 of vit b12 deficiency

Karen2
30 Oct 2013 at 2:10PM
What you have to remember is that once you start taking b12 supplements it will wipe out any evidence of a deficiency on your blood test results.
Also, if any damage is caused by b12 deficiency, repair depends on the severity and length of the deficiency.
I would very much doubt if you could get a doctor to support supplementation but by the same token I doubt if you would get a doctor to confirm it would do you any harm.
You can buy tabs on the net. I can't comment on the other stuff like patches, sprays etc, because I've never used them, but the tablets/lozenges are freely available in 1,000mcg form. The most recommended kind of b12 is methylcobalamin.
There is no law against buying them, so you aren't doing anything wrong.
If you do get any improvements, then your doctor will just attribute it to coincidence anyway.
Or, you could move to Japan and see what they do there. Okay, so maybe a tad extreme...

Karen2
30 Oct 2013 at 2:18PM
Sunshine, you can't just tell me it doesn't show in CSF, you have to point me to the research. B12, as I have been writing, does not always show in bloods. It is not the best diagnostic technique. The studies aren't all over the internet, I can't find them. I need to know more before I just take the statement at face value.
I really don't care what the medical professionals 'say' - because I've emails here from 'specialists' that tell me b12 deficiency is only serious if accompanied by 'severe' anaemia. MYTH.
It's a load of codswallop. Sorry Stewart, frustration with doctors not Sunshine.

Yesss - how often do you get the jabs and what kind of b12 (just out of interest)
Karen2
30 Oct 2013 at 2:26PM
Ooh, I do wish there was an edit facility.
When it comes to whether MS patients have a b12 deficiency - again we are back to the serum b12 test. This test is very specific for b12 but it only shows up the b12 in the blood. It also picks up inactive b12 - b12 that cannot be transported to cells.So, the figures state that this test can be between 20 - 80% inaccurate.
So, you get two people with MS going into a study. The normal assay range is say 200-700. One has a serum b12 level of 199 (deficient) and one has a serum b12 level of 201 (not deficient)
Yet that test can be up to 80% inaccurate in ascertaining whether that non deficient person has a functional b12 deficiency.
We know now, and the film is showing this, that there are warnings going out (not in Europe) to doctors to not disregard b12 levels if they come into the grey area and the patient is symptomatic. So, someone with a level in between 200-400 who has symptoms, should be treated as if they are deficient.
Are they doing that. No.
Again we can go back to Japan. How many MS patients would also be considered to be b12 deficient when deficient would be classed as being less than 500?
Or to look at it another way, do they have fewer MS patients because b12 is tested earlier and patients are treated with b12 sooner if there levels are below 500?

Sunshine
30 Oct 2013 at 2:26PM
They've done studies on oglioclonal bands - if you search the internet for causes of oglioclonal bands you will find lots of evidence
yesss
30 Oct 2013 at 2:46PM
Its Hydroxocobalamin B12 every 4 weeks, do you know if this is good, bad or unusual?
You seem very passionate and knowledgable about this, how long have you been on B12 and have you noticed any benefits since starting?
yesss
30 Oct 2013 at 2:50PM
Its Hydroxocobalamin B12 every 4 weeks, do you know if this is good, bad or unusual?
You seem very passionate and knowledgeable about this, how long have you been on B12 and have you noticed any benefits since starting?
Karen2
30 Oct 2013 at 2:53PM
Yes the have but not comparitive to b12 deficiency.
And again, I state, you have to see all the studies to see how they established their base line. If you give me a link to one of these, I will be more than happy to read it.
But if they are simply using serum b12 then the studies aren't worth the paper they are written on.
If these doctors are so sure of themselves. If they are so up to speed on what b12 deficiency does and it being a demyelinating illness and sure that the treatment they are giving is correct - why aren't they commenting on that film?
Why aren't they saying it's a load of rubbish? Why aren't they putting forward contra-evidence? Why aren't they coming forward with these studies and linking to them?
It's now had over 70,000 hits. I've sent it to numerous clinicians and asked for comments. I've only had one response - and he agreed to alter his website after watching it.
In short they either don't bother to watch it (because they think they know it all) or they do watch it and are stunned into silence.
It's amazing how many people don't watch it and then make out that they have. I've got an (ex) friend who keeps doing this. It's quite obvious he's lying ... but I just let him. He'll watch it one day and realise what a fool he was making of himself.
Sunshine, if you want to comment on any of the aspects of the film, I'd be pleased to hear it. I'm always interested to hear what queries people have, what problems they have with, what message isn't getting across.

Karen2
30 Oct 2013 at 3:00PM
Yess - in the UK that is more than patients would normally be allowed. They normally get it once every 3 months.
In most of mainland europe that would be the standard maintenance dose for someone not having neurological implications.
In the UK the BNF (British National Formulary) states that for suspected neurological implications you should get every other day injections until there is no further improvement.
However, since doctors never attribute neurological implications to b12 deficiency (I am sure you will be aware of this after your tussle with the authorities) then no one ever gets this frequency and doctors look for another cause of the neuro implications.
I self inject, I use methyl. Have I noticed any improvement? Yes. I'm not dead.
I can't give you any more information than that at the moment. Sorry.


Stewart Cumiskey
30 Oct 2013 at 3:20PM
Dear Karen2
Just another (and final) reminder that members should avoid: "multiple posts on the same subject".
I feel, it's safe to say, you've made your point, at length and with increasing gusto. As you have pointed out-
"I'm not dead. I can't give you any more information than that at the moment. Sorry."
In that case, it might be time to try another subject- anything, other than B12. Or maybe engage with other members in an understanding and supportive way (without mentioning b12)- which is best practice for this forum.
Your co-operation with our guidelines would be much appreciated


Stewart (admin)
Karen2
30 Oct 2013 at 3:22PM
Also, Sunshine, I think I should make it clear - I am not out to prove that MS doesn't exist or that everybody with MS is b12 deficient.
What I do know is, for a fact, that b12 deficiency in some cases is being misdiagnosed as MS. Since untreated b12 deficiency results in death, then if you have one member on here that has been misdiagnosed, surely their life is worth a little effort?
That is why I say to you that I want to see the research. I'm not being difficult, I just want to establish the facts. And, because I have experienced the medical profession making a multitude of mistakes, I examine the evidence. I no longer believe what they say to me until I've studied it myself. Because what I do understand is b12 deficiency and I can pick up basic errors in a study - failures that undermine a study to render it worthless.
If we are looking at evidence and causation then we have to sift the wheat from the chaff.
yesss
30 Oct 2013 at 3:26PM
I am a little disappointed you can't give me any more information than that, as i am very interested. :-(
Hope your ok though.
Karen2
30 Oct 2013 at 3:26PM
Sorry Stewart, I posted before I realised your post had gone up.
I'm sorry that you feel that way about a subject that seems to interest your members.
I'm sorry I can't give more information on my case but it's because of a legal matter that is currently on-going.
If b12 deficiency is going to be a mute point and not allowed to be discussed further - then maybe, as has been mentioned to me before, separate forums are opened where members can discuss freely and without restriction (Obviously not by yourselves!)

spacejacket
30 Oct 2013 at 3:42PM
lt is obvious that we are interested in this subject - as we were sometime ago when Karen posted. To discontinue a thread that will possibly make a big difference to somebody's condition is wrong.  Vitamin B12 deficiency is something l have found intriguing since seeing the BBC programme about Dr Chandy. He is a GP - who was treating his patients with B12 - many had symptoms very much like MS - he was told to stop - but continued as he knew he would be failing his patients care. After that l did some more research and found the books 'Could it be B12' a eperdemic of misdiagnosis. So as soon as l saw Karens post l felt  at last someone who knows first-hand. And someone who can advise us. l have never trusted GP/Neuros - in 31yrs of MS - l have heard a lot of twaddle. Mainly because GP's have to stick to outdated - outmoded restrictions.- which are detrimental to our well-being.
The difference between God and a Doctor

God does not think he is a Doctor.

Stewart - Could we have a seperate forum for B12 and D3.
Karen2
30 Oct 2013 at 3:50PM
Nice idea, Spacejacket.
You know Stewart, I'm not sat here making multiple postings to myself (although I'd make less if you had an edit function) I'm responding to what people are asking. if I didn't respond I'd be ignorant.
Stewart Cumiskey
30 Oct 2013 at 5:22PM
Karen, you are of course entitled to your own opinion about the medical profession and researchers. At the MS Society we take an evidence based approach and want to provide people affected by MS with the best possible evidence-based information.
When making decisions about what treatments to take there are lots of things to consider such as the financial costs, the health risks and the potential disappointment if the treatment doesn’t help. These are things we would encourage people to discuss with a health care professional before trying new treatments.
We have a new booklet called ‘I’ve got nothing to lose by trying it’ that might be an interesting read for many people.
http://www.mssociety.org.uk/ms-resources/ive-got-nothing-lose-trying-it
What treatments or therapies one choses to take is very much an individual decision. Of course, your personal experience and B12 deficiency symptoms are valid and you are welcome to share this on our forums.
We would like to provide a balanced view of this issue. So I have spoken to our research team about the role of B12 in MS. And this is what they told me…
People who have pernicious anaemia can't absorb enough vitamin B12 from food due to a lack of a protein made in the stomach.  This leads to vitamin B12 deficiency.
One of the most notable studies to date includes research conducted by a group in Nottingham that looked at the occurrence of a number of conditions in 658 people with MS compared with the general population.
They found that the people with MS were more likely to have pernicious anaemia and vitamin B12 deficiency than the general population.  
The link is not definitive and further research will be needed to confirm any link between pernicious anaemia and MS and to understand the relationship between the two conditions. 
There also doesn’t seem to be any evidence to support the effectiveness of b12 injections (that some people may choose to take).
The clinical symptoms of b12 deficiency can be similar to MS and regarding the idea that b12 deficiency could make some symptoms worse, the evidence appears to be mixed.

Best wishes

Stewart (admin)

Karen2
30 Oct 2013 at 5:57PM
Thank you, Stewart.
I think maybe the point that has been missed, is not that some patients with MS may have an additional b12 deficiency but that they have been misdiagnosed with MS when in fact they have a b12 deficiency.
I have been looking up the O bands that Sunshine mentioned, but although some references are made to the study, I can't find the study. However, what is clear is that it is very difficult - excluding the O band situation - for doctors to differentiate between b12 deficiency and MS.
I also understand what your research team are talking about in respect of intrinsic factor antibodies in respect of b12 absorption. However the major cause of b12 malabsorption is low stomach acid. This is a failing on the part of the parietal cells to release enough stomach acid. Murphy - one half of the Nobel Prize team that discovered the treatment for b12 deficiency, did much work in this region.
Very interesting to note however that recent research suggests MS patients are likely to be b12 deficient, although if you could link to the study showing the injections were not of benefit to them, I would much appreciate. Benefits are dependant on frequency and dosage - so the statement that they weren't of benefit means little until you know what the treatment was.

Also it would be helpful, not only to me but to the members, to link to the research that suggests b12 could actually make MS patients worse? I've never heard of this and I've read an awful lot of research papers today (thanks to Sunshine!)


Moyna
30 Oct 2013 at 7:01PM
Hi Karen
I am going to ask a private GP to let me try the B12 theory - the blood tests wont work for me now due to 3 monthly injections and supplements.
What should I ask for
Injections every other day for 6 weeks and then weekly after that ??
or what would you recommend ?
Thanks Moyna xxx
Karen2
30 Oct 2013 at 7:23PM
Oooh. I don't know now whether I can answer you or not? Or maybe I can and not use the b word.
I would think that after 6 weeks of every other day then you would know if there was going to be any improvement. After that time, you literally have to go by how you feel. I saw improvements within 2 hours. Most particularly with vision and clarity of thought.
Stuart, the whole point about my originally posting, was just to highlight the problems associated with 'the b word' (Ha, you nearly caught me out) Most doctors don't even think it makes you very ill. Many doctors think it is a placebo. Plus the standard treatment for it in the UK is amongst the worst in the developed world. These facts are why I linked to the film (which didn't go up) because they actually show a doctor with the illness, who didn't even recognise it in himself. And he was diagnosed (Originally) with a neurological illness of unknown cause.
If the medical professionals of today, don't know what it does, how can they (at the point of contact) be excluding it?

DoctorGeoff
30 Oct 2013 at 8:33PM
Well Karen,
If you cannot find the study that referred to B12 and Oligoclonal Bands, try this
http://jnnp.bmj.com/content/71/suppl_2/ii9.full
Now that took me about 2 minutes to find.
There is one point that seems to have been missed in this discussion - the presence of  Oligoclonal Bands in CSF is a very strong indicator of MS.  Their absence does not prove that MS is not present.
Thus, the lack of OBs in the CSF does not - of itself - prove anything.
If you actually read Stuart's post about the large sample in Nottingham the only thing that you can take from what is actually a correlation, is that there is a link between MS on the one hand, and B12 deficiency and pernicious anemia on the other (strictly speaking that is a multiple correlation) and you should know that correlations do not have any directionality - so you do not actually know what causes what.  If, that is, either causes the other.
With respect to mis-diagnosis, OK, you have made your point, but don't you think that maybe you should find another forum to promote your opinions?
Geoff
Moyna
30 Oct 2013 at 10:07PM
This discussion as opened a new light to me as an undiagnosed person. The MRI lesions in B12 defieciency I read tonight are on the lateral and post lateral columm. I then went and checked my MRI report and that is were mine are. In respect to Lumbar punctures go the Porf G said on the Barts site the people with MS and clear LPs do not have true MS.  
Moyna xxx
spacejacket
30 Oct 2013 at 10:50PM
l think Karen has found the right forum - if it only helps one person - its a winner.
Brog64
30 Oct 2013 at 11:50PM
Hi Karen2,
 I don't know of a single medical professional that wouldn't know about Pernicious Anaemia and its demyelinating effects. AND the fact that it is an absorption problem due to a loss of the intrinsic factor. Pernicious anaemia is a well recognised auto-immune disease.
And Drs routinely test accordingly for it when a possible MS diagnosis is in the offing. Indeed here in Australia at least, it is the very first test done in the 'rule out everything else' stage. And it isn't just a B12 serum level test. If it is found to be borderline low/normal or if nerve damage is evident on examination further tests are run to test the other parts of the blood chemistry to check for mal-absorption problems that are the cause of Pernicious Anaemia, specifically various antibodies that are present in the cases of an auto-immune disease which is what Pernicious Anaemia is.
Also B12 deficiency causes peripheral nerve damage as well as CNS damage and peripheral nerve damage is a big red flag to the diagnosis NOT being MS. Therefore someone presenting with this would be even more thoroughly screened for alternative diagnosis to MS.
Once B12 deficiency is ruled out THEN further investigations are done for a possible cause for neuro problems.
As regards to the OG bands it is important to realise a couple of things here. One is that OG bands are NOT diagnostic of MS. Many people can be Dx without them and further the presence of OG bands is not the issue, it is the presence in the CSF but NOT in the serum that makes it more of an indicator of MS. However in some cases of Pernicious Anaemia OG bands are found in both the serum AND CSF which again would be a red flag for it NOT being MS.
I don’t dispute that people may well have both conditions. Auto-immune conditions do tend to cluster together and if you have one you are more pre-disposed to having another one. And yes, people and their Drs do need to be aware of the possibility of having both diseases concurrently.
But to be claiming that most Drs are missing or are ignorant of this first step in diagnosing MS is taking it a bit too far. Especially when you then imply that loads of people are misdiagnosed as a result creating unnecessary fear and concern amongst people with MS. Not to mention the unnecessary cost people may now be tempted to incur as they rush off to self-medicate for something that may well not be necessary.
And this is for all the other people taking part in this thread…..
By all means ask your GP’s for a routine test for Pernicious Anaemia rather than just B12 Deficiency but tbh don’t be surprised if the request is met with scepticism because unless you are presenting with symptoms of the disease it is unlikely you will be treated for it! Believe it or not even your average GP will be well versed in the diagnosis and treatment of Pernicious Anaemia.
Cheers,
B happyflower