Coxsackievirus Causing Post Viral Syndrome?

DR:
Last March (2006) I started to experience symptoms of numbness, tingling, burning and severe weakness in my thigh and calf muscles. Simmultanously I also got carpel tunnel in both wrists. I was very sick from the pain found that sitting relieved my symptoms briefly but eventually they would return when I attempted to walk. Gradually I began to get sicker and my neuroligist told me after several blood tests that I had the coxsackievirus, but he was not sure the coxsackie was responsible for the neuropathy. After 5 hospital vistis including the Cleveland Clinic, 2 muscle biopsies, MRI's, CT scans, spinal tap and several rounds of rehab, all testing was negative except for original bloodwork which originally when this first started showed my immunogammaglobulins were out of wack and my ANA was slightly elevated. Since then those tests have been normal. It was finally concluded by a neuromuscular specialist that I suffered from a post viral syndrome and she felt that I would slowly recover within a year . I am not sure that this is what caused these symptoms and am concerned that there is something else causing this that may possibly have been missed. The diagnosis given was purely based on exclusion. I was using crutches, and a walker for the first 5 months and then for the final part of the year (7 months)I was in a wheelchair and unable to walk. I started walking in mid-December and have continued successfully without a great deal of pain until now. The past few days I feel the symptoms cropping up again deep pain in the thigh muscle in both legs and the numbness, tingling and burning pain. I also I am not sure if it is normal for this to happen after such a long illness and recovery. The weather is very damp here and It may be just a temporary setback, and I would like to know how long this type of illness takes to heal. I am also searching for anyone who may have had this or knows someone who did. Can I recover from these neuropathies? I am fighting to get back to work and can't until my strength and endurance has improved more. Very concerned here in WNY.

[Forum-M.D.-SH]

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.

[Suett]

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.
Best wishes,
Sue T

[Gracygirl]

Hi Suett,

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?

[vago girl]

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..

[Gracygirl]

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.

Gracygirl