Thread: Please Help!
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Old 11-01-2006, 06:39 PM
jccgf jccgf is offline
Senior Member (jccglutenfree)
 
Join Date: Aug 2006
Location: Wisconsin
Posts: 1,581
15 yr Member
jccgf jccgf is offline
Senior Member (jccglutenfree)
 
Join Date: Aug 2006
Location: Wisconsin
Posts: 1,581
15 yr Member
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Hi Tony,

Do you know if your doctor has ever tested you for B12 deficiency, and if so what you B12 level was?

I was once diagnosed with BFS, and several other "idiopathic" conditions like BVVP (benign paroxysmal positional vertigo), and idiopathic premature ventricular contractions. I went to about 8 specialist over 3-5 years... and nobody could find anything. I believe by this point my doctor thought I was a hypochondriac or worse. I was beginning to feel like one, too, until the symptoms began worsening at a very rapid pace. Finally my doctor sent me fpr a neuropysch evaluation.... and a neurologist thought to check my B12 level, and thank goodness knew that B12 deficiency sometimes exists in someone with a low normal level. Mine was 294 (150-1100). All of my symptoms resolved with the correction of my B12 deficiency.... and my benign and idiopathic diagnoses all disappeared.

SO... you might want to visit the Vitamin, Nutrient board here... and ask rose about B12 deficiency. I think this is definitely something you should consider.
http://neurotalk.psychcentral.com/fo...sprune=-1&f=49

Also check out the Peripheral Neuropathy board...as twitching and weakness can be a sign of nerve damage...from many causes including vitamin deficiency, medication side effect, gluten sensitivity, thyroid disease, and bunches more.
http://neurotalk.psychcentral.com/fo...sprune=-1&f=20

You can also find the list of symptoms I had with my B12 deficiency by checking The Gluten File linked under my signature. At the bottom of the right bar is a page about B12 deficiency...which links to another page about my symptoms. Have they checked your thryoid function? Sometimes that shows with nerve damage, particularly in the thumb/forefinger region.

I agree with others that the likelihood of ALS is probably slim. But, twitches and weakness can be cause for concern when they are new symptoms for you. It was certainly disconcerting when it was happening to me. I remember the neurologist telling me to call him if I started falling down ... and as I was walking out the door... he suddenly got the idea to check my B12~ because he remembered sometimes patients with B12 deficiency complain about twitching and buzzing.

I hope it will be reassuring for you to hear that twitches and weakness are symptoms many people have. AND... sometimes there is an underlying cause that is treatable, so I think it is good you are exploring possiblities. Left untreated, B12 deficiency can lead to very serious neurological damage. And I must say, I have known many neurologists who failed to test their patients for B12 deficiency....so double check your lab results to see what they have looked at. And if you don't have them... request copies. IF you haven't been tested, check with rose in the vitamin forum about proper testing.

I'd look at some other things.....starting with the suggestions I've given. The people on PN are great, and will probably have some good ideas for things you might want to check on.

Hope this helps!

Cara
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Last edited by jccgf; 11-01-2006 at 07:59 PM.
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