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READ ONLY IF YOU WANT THE LATEST ON MY (JR0) SITUATION

Postby jro on November 17th, 2008, 9:45 pm

My doctor finally called me late Sunday night. I got to ask most but not all my questions (you always forget a few). He pointed to the following on my blood tests that he says points to an autoimmune explanation for my problems (random widespread twitching/constant spasm in left hand/tingling/but no weakness) under the broad heading Chronic Immune Dymelinating Polyneuropathy:

*Smooth Muscle Antibody (IgG) 20 (anything below 20 is normal so this is borderline high)
*IGG 2 -709 (normal is 241-700)
*C3D Immune Complex Raji 13 (normal is 0-8)
*IMMUNOFIXATION, SERUM: An abnormal trace concentration band pressent in the GAMMA region appears to be an IGG LAMBDA monoclonal immunoglobulin.
*IMMUNOFIXATION, URINE- A trace concentration band migrating in the gamma region was too low a concentration to identify by immunofixation studies.
ANA titre over 2000.

I think he feels the last three results to be the most significant. These are probably highly specialized tests and neither of my first two neuros ordered them except for the ANA.

The doctor told me that he sees lots of patients with twitching and spasms like mine and many have nerve damage on the muscle biopsy but don't end up disabled. He said CIPD is a lot more common than reported and that he sees one to two people just like me every month. He says he has great success in treating this with IVIG and other similar methods.

All those commenting on the muscle biopsy issues I raised are right. This test is rarely ever done. You never see it mentioned in studies about twitching or neuropathy. My doctor is "the father of the muscle biopsy" so he is charting new territory in this area.

The biggest downside of my conversation with him was when I asked about the inconsistent nerve conduction studies done three weeks apart. The first done by his colleague's fellow at USC. I mentioned that his colleague's fellow warmed my feet before the test and I don't remember this happening when I did the test at his office. I had read that cold body temperature slows nerve conduction and wondered if this could explain why my test went from normal to severely abnormal. I actually want it to be abnormal because sensory nerve problems point away from ALS and towards a treatable condition. He would not say ANYTHING on why the sensory nerve tests were different. He was very defensive and curt. He said "I will say nothing else on this subject except doctors sometimes disagree." I thought it was an objective test and just wanted possible (not certain reasons) to explain the discrepency. He wouldn't speak to the issue. He did say "I don't think body cooling effected your results." But he didn't and wouldn't say why. This just didn't make me comfortable.

I asked about the tongue issue, he said he didn't think it had any special signficance. He said he just had a patient complaining of similar symptoms who said they went away after IVIG treatment (this is the treatment that works if your problem is autoimmune).

I know I said I would stop posting but I thought I have might have info that might be beneficial to those wanting to know more on how to possibly find answers if they are really suffering. Those with constant twitching may fit this category and I want to offer them possible help.

Any comments on your nerve conduction tests and body warming would be helpful.

Thanks,
jro
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