Have to tell you that nerve tests aren’t …

January 15, 2010 at 7:54 pm

the end all and be all of diagnostics. I was ‘very good’ then ‘good’ then ‘not good at all’ In my first year of nerve conductions studies. It went downhill and faster as the numbness spread. Plus the fatigue, and muscle weakness because of the fatigue….. The clincher was the spinal fluid assessment taken almost a year after my onset. The #’s were absurdly high for the specific anti-bodies at work on my nerves. One month after the test results plus blood works came in? I was on IVIG…which worked for me [WHEW!].
To clue into a diagnosis is YES the elimination of ‘other’ issues, but it must show: 1-slowed to no nerve conduction or muscular conductions; 2-increased number of bloodwork indicated anti-body activity; 3-no indications of any tumors or traumas using MRI and other radiological techniques; and lastly 4-certain high levels of anti-bodies present in the spine [ergo the spinal tap issue]. The very last resort IF all of the above are inconclusive is the seural nerve biopsy [where they cut out a bit of nerve – usually about 1-4 inches at the ankle] and even then things mite not PROVE CIDP.
Actually there are about 10 criteria for determining CIDP? But I can’t find those web sites anymore…I’ll check and see IF I can find some. I’d sort of met the 7 out of 10 rule in my humble opinon? My doc was ahead of me on this opinion tho. Thus I got treatment. I truly wish that my first neuro had NOT been such a trogdolite? If he’d not been so. I would have gotten treatment much sooner and thus prevented the nerve damaged I’d had.
So Keep at it. Keep faith that you have some clue as to what is going on with you? And that you WILL Find a super doc and get treated AND SOON!
PS Lumbar punctures are a no-brainer IF you read up all about them before and follow DIRECTIONS EXACTLY! IF it gets you treatment? Its easy to deal with! Hey it’s easier than a colo-rectal exam! And no preps! Just not eating some things!