First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
Post viral syndromes that affect the nervous system are very difficult to diagnose and even harder to treat (sometimes also referred to as myalgic encephalomyelitis). Patients with this disorder often have weakness, numbness/burning pain, cognitive difficulty and chronic fatigue. There is no specific test that can diagnose this disorder and we are often left to complete an extensive evaluation looking for other causes. This disorder has been controversial in the past and some doctors have attributed the symptoms to a psychological problem. We now understand that it is a real neurologic problem, but we are powerless to treat it, except with rehab. It is my hope that further research in the field will generate answers as to the etiology (what causes it) and possible treatments. I do recommend a extensive workup to evaluate for other, more treatable causes, including the workup that you described (you did not mention an EMG, if you did not have one you should). Seeing a neuromuscular specialist at a major academic center (as you have) is definitely the way to go. Unfortunately many patients with this type disorder have chronic relapses and continued symptoms, but some do fully recover (20%). I would view your relapse as an oppertunity to be retested to some degree to see if anything new shows up in your testing that was not apparent before.
I hope this has been helpful.
Sorry there are no magic cures for this, only time can help provided the virus has exited the system and there is no underlying medical issues that would aggervate the neuropathy. I was in the hospital for 60 days in 5 hospital visits,
my diagnosis was based on exclusion. That is why I am concerned. Thanks for your concern.
I have very similar symptoms but my MRI stated I had abnormal signals and a single white matter plaque on the brain?? But I work in the medical field and one physician I know said he thought with my symptoms it was what you have... I had a very bad viral infection and was hospitalized 20 years ago for a week and he said it probably stemmed from that because these viruses are so smart... My question is, for the 'post viral syndrome; what did they do for you? is there any medicine to take to make it go away???? Thanks and take care..
They told me that they checked for Lyme, it was one of the first tests that was run, although if your claiming this is the only place that could give me a definite diagnosis, I should redo the test. Thanks for the information.
How are you doing now?
Have you been checked for Lyme disease through www.igenex.com? It is the only lab that I know of that is accurate . . the other testing I have done has missed it several times. I was told I had post viral condition and 20 years later found out it has been Lyme and Babesia all along. 30+ docs have missed this diagnosed due to poor lab testing.