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I am curious to know other’s stories of post viral neuropathy.
Neuropathy | Last Active: Aug 8, 2022 | Replies (62)Comment receiving replies
Hi Curt. It has been 21 months since I first had the viral illness that caused the neuropathy. I have never gotten another diagnosis other than Post Viral Neuropathy. The only abnormal test that I had was the presence of an antibody that they haven’t been able to identify. For a long time I worried that it was something else, but I finally accepted that diagnosis and decided to live with it. I was told that the nerves that are damaged from a viral antibody reaction may slowly regenerate. Or they may never get any better. My symptoms have improved somewhat albeit slowly and non-consistently. I still have some tingling in my feet and muscle cramps with twitching in my calves. My hands bother me the most, especially at night and early morning when they really burn. I exercise and do yoga daily - that helps. I took a low dose Amitriptyline for about a year. That helped quite a bit, but I didn’t like the side effects so I am tapering off of those. I hope your wife finds some answers and starts to improve. Know that it may take awhile but have her keep trying different things to feel better. Listening to other’s stories helps😊
Cindy
Replies to "Hi Curt. It has been 21 months since I first had the viral illness that caused..."
Hi Cindy @cindy62. I'm Rachel and I wanted to let you know that the whole middle paragraph in your response to Curt grabbed my attention. From "For a long time" to "albeit slowly and non-consistently"....they could be my words. Only difference is I have Small Fiber Peripheral Polyneuropathy from B12 deficiency. My neurologist told me the same, there might be a chance of nerve regeneration in 2-3 years. I've had some improvements over the past year and a half but, where some areas show improvement, other areas peek with new or different pain/sensations. My main symptoms are burning pain, numbness, pins/needles, weakness. I'm glad you do yoga to help strengthen and keep focused. I receive weekly myofacial release treatments but truthfully, because my whole body is afflicted, I can only have one area worked on each week. I also do mild stretching and fine tune stretches to what does not cause flares. I too have cramping/spasm and muscle twitching. I think I've finally accepted this chaos in my body and am learning better how to live with it but, I will never give up hope that maybe, just maybe, nerves will regrow without dysfunction, one day. I'm sorry you ended up with Post Viral Neuropathy and am going to keep hope alive for you as well that maybe, just maybe, you too will have successful nerve regeneration, one day.
Best wishes,
Rachel
Hi Cindy. How did they determine there was a viral antibody present? Do you remember which blood test determined that? Thanks so much. Hope you are doing better.
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Thanks Cindy
She has had increased symptoms with burning and tachycardia since reducing the Lyrica. She was only on 25 mg x/day and went to 25 1x/day and since she reduced, her heart is all over the place. Her Neurologist and her pain Doctor thinks she is nuts because it is a low dose but the Doctor she saw today said it was too coincidental. She feels so defeated after these past five months with so many tests and so many doctors giving their opinions that are all to varied from one to the other. After reading the side effects that validate her symptoms, they say " the lawyers make them state that but don't believe it".........