I am curious to know other’s stories of post viral neuropathy.

Thank you John. This is an option we are considering. She has had a second opinion at Brighams Womens in Boston and are seeking a second referral at that hospital.
Curt

@curtj You are very welcome. Curt, please continue to use this forum as with it's use you're effectively networking with a multitude of experts (affliction veterans) in dealing with a plethora of health issues. I have learned many many things about my wife's condition since I came on here in January. I hope you and your wife find the help you need and hope comfort comes to her ultimately. Best, Hank

Thanks again and I will continue!

I have wondered if my Neuropathy came from an unknown foreign virus that nearly killed me. I was sick for 2 years, diagnosed with the 'flu' a dozen times, then chronic fatigue and fibromyalgia. Toward the end, there were days when all I could do was lay in bed and moan and groan - the pain was everywhere.
I became so weak that sometimes all I did all day was pick up my daughter from school.
I told every doctor I had but none of them knew what to do. When I told the Hormone Doctor, he drew 2 cases of vials of blood and had his lab test me for everything under the sun. They found cytomegalovirus and a virus that no one had seen before but there was a lot of it and it was actively replicating. My adrenals and immune system were so worn out from fighting the virus that they were dangerously low. My doctor suggested that I take the results to my Internal Medicine Doctor who could prescribe heavy anti-virals for the cytomegalovirus. There was no known medicine for the mystery virus but the anti-virals for the cytomegalovirus might kill the mystery virus too. I also went to Santa Barbara several times where a doctor took the blood out of my body and ran it under ultraviolet light and put it back in (it kills viruses).
My Internal Medicine Doctor went out on a limb and prescribed Valcyte, plus other medicines to beef up T-cells. In about a month, I started feeling better. My doctor said I had been about 1/2 an inch from dead. The hormone doctor gave me human growth hormone to build muscle back up - I went back to the gym, started running and working again, and finished raising my daughter.
We stopped the Valcyte after about a year and tapered off the other medicines. Doctors said that the virus never really dies, remnants of it stay in the body and if I get the flu or a lot of stress, the mystery virus can start replicating again. They told me to get a flu shot every year so I do. I am careful to try to avoid getting this Chinese virus that's going around because I'm sure my body doesn't want it!
I'm reading your experiences with viruses and Neuropathy with interest.
Peggy

I have posted on this thread previously, but this sounds timely. My symptoms and subsequent diagnosis with Idiopathic Sensory Neuropathy, I associate with the first Shingrix immunization I received. I will not get the second dose, unless someone can convenience me otherwise. I have no pain, very disrupted sleep, find yoga helps, and have good balance/gait. Once I get out of bed, the symptoms of creepy/crawly things under my skin of my calf’s, disappears. I take 600 mg Gabapentin at bedtime and 25 mg Amitriptyline in the evening. These I have taken for a year. When I entered this site, I was wondering if anyone found improvement or a diminished numbness in my feet/legs. I have not found any posting to support this.

I am also looking for more help with peripheral neuropathy. Cause is possibly related to vitamin b supplements ? Could anyone share any information if they have had something like this happen?

Hi @notastall78 One person who has clearly stated that her neuropathy onset is attributable to low levels of B-12 in her system is Rachel @rwinney and she might comment on this to you directly, or if you search her posts you will undoubtedly find references she has made to this in the recent past. There is also a discussion here on Connect regarding B6 related to neuropathy, Here is that link: https://connect.mayoclinic.org/discussion/b-6-vitamin-danger/
If you use the search field at the top of the page (click on the magnifying glass symbol) you might find other references to specific b vitamins. Hope this helps, Hank

Thank you for your reply. I am only taking D3 vitamins. Trying to determine if I should be on Magnesium that was prescribed for me if B supplements could be the cause of PN. I’ll see my doctor next week. I am looking for any helpful information on PN due to B vitamins. And advice on what to do next. This all began in June. And I don’t still have many answers. Also. Would like information on how long it takes to get numbers down. Thanks.

@pfbacon Wow, Peggy, I am glad you did not get a half inch farther! I'm glad you made it through that ordeal. This story of yours might easily fit with the Neuropathy Journey stories discussion which John @johnbishop started a while back. It seems like there are a lot of ways to develop peripheral neuropathy, viruses being among them. Again, glad you made it through.

Side note: you mention Santa Barbara. I think I remember you saying not long ago that you live in Delaware? Quite a move you made from one coast to the other. That was after this bout of virus?

Best to you, Hank

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