ALS For support and discussion of Amyotrophic lateral sclerosis (ALS), also referred to as "Lou Gehrig's Disease." In memory of BobbyB.


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Old 11-01-2006, 06:39 PM #31
jccgf jccgf is offline
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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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Old 11-02-2006, 09:47 AM #32
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Thanks for all the input guys. I am scared...and have an EMG scheduled next Thursday. Hopefully this will put my fears to rest.

I went to my GP yesterday to follow-up on my calcium level which was midly elevated and my red blood cell count with also was mildly elevated.

I had a clean neuro exam, with good strength and normal reflexes. I just want the EMG to turn out good.
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Old 11-02-2006, 09:58 AM #33
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And when your EMG comes out clean, BELIEVE IT!!!
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Old 11-02-2006, 10:39 AM #34
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I will believe it. I just have this thing in my mind that my neuro might have missed something on the exam. I question why he is even doing the EMG. He says it will ease my fears, but in the back of my mind, I am thinking that maybe he is doing it because he is not that certain with his dx of BFS.

Wouldn't he be able to find some abnormalities on the clinical exam of I indeed did have ALS?
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Old 11-02-2006, 10:59 AM #35
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Quote:
Originally Posted by arrigoar View Post
I will believe it. I just have this thing in my mind that my neuro might have missed something on the exam. I question why he is even doing the EMG. He says it will ease my fears, but in the back of my mind, I am thinking that maybe he is doing it because he is not that certain with his dx of BFS.

Wouldn't he be able to find some abnormalities on the clinical exam of I indeed did have ALS?
Yes,definitly! There you go answering your own questions again.
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Old 11-02-2006, 11:15 AM #36
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Thanks for the support. I am just so scared right now. Next Thursday can't come soon enough! (EMG scheduled then)
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Old 11-02-2006, 12:46 PM #37
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I liked my response I left yesterday but some didn't see the humor in it. I apologise for my post.

Jeff
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Old 11-02-2006, 12:54 PM #38
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What was your response yesterday?
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Old 11-02-2006, 01:44 PM #39
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Anyone else with any input into my situation? I know I have health anxiety issues, but do any of you think I have ALS based on the information I have provided?
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Old 11-02-2006, 02:00 PM #40
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....no....
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