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Old 07-24-2013, 10:30 AM   #1
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Neurological autoimmunity ?

I've been tested for MGP/Lambert Eaton Panel, twice..the first result values were P/Q Type calcium channel AB ...0.04
N-type CA channel AB ...0.01
ACHR binding AB......0.00
ACHR modulating AB 0
Striated muscle AB negative
second test:
P/Q type calcium channel AB...0.00
N-type CA channel AB..... 0.00
ACHR binding AB...0.00
ACHR modulating AB 12
Striated muscle AB positive 1.96
Can anyone explain what this means. My neuro only told me that I do not have LEMS. and hasn't explained it all to me. Where do we go next? I feel as if I have been an experiment.

 
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Old 07-31-2013, 08:34 PM   #2
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Re: Neurological autoimmunity ?

Hi. I know only one man with Myasthenia Gravis, and only casually at that. Are the tests you listed all for that rare form of MG called LEMS?

If you'd care to post your symptoms, we'd probably be able to provide better input.

Offhand, I'm curious whether you've had a positive ANA, and its pattern. Also, which other conditions you've been tested for, and whether you're sure your symptoms and tests so far point ONLY to neurology. I only wonder that because other AI's can cause neuro-like symptoms, to varying degrees. (I've had some milder ones with lupus.) Sorry this is so brief---and I hope you post more soon. Best wishes, Vee

P.S. There are several other Neuro boards here that you could also try, if you wish. To get to them, in the blue bar above, select "Find a Board", then look for the Brain & Nervous System category.

 
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Old 08-01-2013, 02:52 AM   #3
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Re: Neurological autoimmunity ?

Good morning. This is a P.S. to what I wrote last night. The tests you list were unfamiliar, but after reading some, they appear (to me) like they're in the ballpark of Myasthenia Gravis (MG), LEMS, and Autoimmune Autonomic Ganglionopathy (AAG). As for where to & what next, the best place to start is obviously with your neurologist, to find out what conditions have been tested for & ruled out, and what he/she intends to look for next.

Another approach would be to first do some homework on your own before speaking with the dr. Look for conditions that are "differential diagnoses" to MG, LEMS, and AAG, so you could ask pointblank whether you've been evaluated/tested for each. BTW, I suspect that list would be lengthy and would include things like SLE (lupus), RA (rheumatoid arthritis), Graves disease, hyperthyroidism, myositis and dermatomyositis (those are AI's that involve muscles), ALS, Multiple Sclerosis, etc.

You didn't say how long you've had symptoms, or how many rounds of labs and other tests you've had. If this process has gone on & on without getting you anywhere, I'd probably research other neurologists in my area, probably at teaching hospitals. (I put together a "Plan B" after years of getting nowhere locally. When I finally concluded that I needed a better rheumatologist, I just pulled out my annual magazine feature on "best doctors" arranged by speciality that I'd saved.)

Doctors approach a diagnosis in tiers, it's the nature of the profession: they first look at the group of most likely candidates, then the next most likely group, and so on. I probably wouldn't consider myself "stuck" until I'd given my doctor the chance to speak. Also, I'd definitely want to see that he/she is willing to refer you to other appropriate specialists. For example, let's say that on the list of conditions that haven't been considered, some are within rheumatology and endocrinology. Well, I'd want those OTHER specialists to do those evaluations. Anyway, I hope something above is useful. Drop another post when you can, OK? Best wishes, Vee

 
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