Neuropathy due to Coxsackievirus?

[Gracygirl]

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 coxsackie virus, but he was not sure the coxsackie was responsible for the neuropathies. 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 showed my immunogammaglobulins were out of wack and my ANA was slightly elevated. It was 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 confident that this is what caused these symptoms and am concerned that something is being overlooked. 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 and 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, but I am searching for anyone who may have had this or knows someone who did. I need advice on how to deal with the pain. Can I recover from these neuropathies? Thanks all.

    
  













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[Gracygirl]

Hi Cpapad,
I do agree we should email and see if we can help[ each other out.  Hopefully this works. Northernlitegirl at Yahoo.  

[cpapad]

Hi.
I do not know if we can provide our email address here. Anyway, I will try.
***@****
Please fill free to contact with me. We can exchange experiences...
Christos

[Gracygirl]

Very interesting...I had stomach trouble and was very sick before I got weak and was unable to walk.  I also had lyme testing, metal testing 967 to be exact and every test they could think of before they diagnosed me with post viral syndrome.  They even thought I may have periodic paralysis...this is a irregular flux in potassium levels in the cell, they sometimes call this channelopathy?  Nothing showed up.  I saw an infectious disease specialist and had an HIV test as well, nothing showed up. They told me the same thing as you...rest, wait and it will be a while before I heal.  Its been a year since this virus entered my system and I am still very tired. The numbness and tingling in my legs comes and goes to some degree but hasnt completely gone away yet. I am concerned too.  Life doesnt wait for sickness, if you know what I mean. Did you check out the neurology forum? I saw a few interesting cases there as well.

[cpapad]

Hello, I think that we share a similar experience....
The last few months, I felt so bad and tired all day. For a few days, I had upset stomach every day, and very bad nausea and sometimes vertigo. I started not to sleep well, sometimes not at all. All these in combination with an extremely stressfull situation (I was sure that I contracted HIV a few months ago), make me to be so crazy about my symptoms. Be more and more convinced that I had something really bad, one weekend I stressed so much that I was crying almost half of the day. After this weekend, I developed severe neurological symptoms. I feel until now, a constant internal vibration sense in my whole body, balance problems, feeling that I do not walk well, and things like that. I went finally to the doctor, actually many doctors, including 2 neurologists, and had a ton of blood being tested and 2 brain MRIs. All tests came back negative (including my HIV test), however, I had a sligtly elevated positive ANA. The doctors told me that probably I have a kind of post-viral syndrome, and this will last for long time but hopefully I will recover. They told that I can not do anything about that and I should be patient. The last few weeks, I have numb feet and hands, tingling, pins and needles on my extremities. Muscle twitches, and crazy things like that. I bought the book "Living with M.E. - Post-Viral Syndrome", and it is really a very good book. I hope I will recover soon. Unfortunatelly, I am still afraid about many other things, like MS, and Parkinson. You should know that one possibility that you should exclude it is Lyme disease. Unfotunatelly, in my case this was not excluded and I am still afraid. I hope you the best, and I hope we can help each other.