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

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.

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

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

Thank you, Hank. Yes, I spent most of my life in Los Angeles - Santa Barbara was a 2-hour scenic drive up the coast. Several things happened that propelled us out of California in 2010 (I miss it still). We spent a couple of years around Las Vegas, then followed daughter to Washington DC, living in a Virginia Suburb. I didn't like Virginia, kept visiting the beaches from Atlantic City to Outer Banks. We settled on Bethany Beach as our favorite, retired and moved here about 2 years ago. I love it here, I run on the beach every day no matter what the weather, and have made friends. There is an acute shortage of doctors here, but since Covid-19 became epidemic, doctors have been tele-conferencing so I'm zooming with some of my favorite old doctors wherever they are. I'm advising them all to come to Delaware.
Where are you ? Anyone who wants to share such information as where you are and if there are good doctors there would be doing the rest of us a favor should we want to move. Recently, friends here pointed out that Johns Hopkins is only a few hours away and they might be interested in Neuropathy (Mayo told me that they have so many of us that all the appointments and even the waiting list are full).
Peggy

Thank you, Hank. Yes, I spent most of my life in Los Angeles - Santa Barbara was a 2-hour scenic drive up the coast. Several things happened that propelled us out of California in 2010 (I miss it still). We spent a couple of years around Las Vegas, then followed daughter to Washington DC, living in a Virginia Suburb. I didn't like Virginia, kept visiting the beaches from Atlantic City to Outer Banks. We settled on Bethany Beach as our favorite, retired and moved here about 2 years ago. I love it here, I run on the beach every day no matter what the weather, and have made friends. There is an acute shortage of doctors here, but since Covid-19 became epidemic, doctors have been tele-conferencing so I'm zooming with some of my favorite old doctors wherever they are. I'm advising them all to come to Delaware.
Where are you ? Anyone who wants to share such information as where you are and if there are good doctors there would be doing the rest of us a favor should we want to move. Recently, friends here pointed out that Johns Hopkins is only a few hours away and they might be interested in Neuropathy (Mayo told me that they have so many of us that all the appointments and even the waiting list are full).
Peggy

Just for added info, I went to Johns Hopkins for my short fiber neuropathy. I have burning pain in feet, legs, hands, and arms caused by a cervical steroid injection. I saw Dr. Koshnoodie. They did leg biopsy and EMG, which showed short fiber neuropathy, but did nothing after that. I thought they would have a team of doctors to try to figure out what was wrong, but no. They didn't even refer me to their pain management department. I am not saying you shouldn't try them, but I just wanted to share my experience. I am glad you like Bethany Beach. I went to high school in Lewes Delaware, and we now have a summer house in Dewey Beach.

curtj, without any real medical training I'd like to share my own experience. I tried gabapentin four separate times and got sick each time. My doctor suggested Lyrica and I took only ONE pill. Within a few hours I was so sick that my husband had to take me to the ER. I told the doctor there that I had only taken one Lyrica pill. He said (and I quote), "Well you took ONE!"...I also have Atrial Fib, similar to her Tachycardia.
I say all that to say that she should probably not take either medicine. I think that they are in the same family. Correct me if I am wrong on that. The only thing I can tolerate is hydrocodone, 5 mg, three times a day. A side note: I don't tolerate many drugs anyway, but that seems to give me almost no side effects other than constipation which can be alleviated by Senna tabs or a glass of prune juice. I even have recently had auditory hallucinations several times with the lowest possible dose of amitriptyline. I hope she can avoid these meds that make her sick. Our bodies are all different and usually doctors prescribe the most commonly used medicine. Maybe she, like me, is uncommon!

Mary, my heart goes out to you! I can't stand the side effects of Gaba so tried Lyrica and they were worse. I resumed Gabapentin bc my Pn was causing me to have to fight for my sanity. Even though I'm at a subtherapeautic dose; 300mg. twice daily and 200mg. for 3rd dose, I am barely putting up with the horrible side effects for some quality of life. What are these side effects? Let me count the ways! Mentally detached; everything seems surreal. Balance, memory, coordination and judgment problems to name a few. The pain (I have many different types) is still there buy my sense of it/them is dulled.
I will keep you in my heart and pray, Sunnyflower, 🙏💕

@pfbacon, Funny, Peggy, how some of these places with supposedly great reputations don't necessarily stack up. In 2013 my wife went to Duke In North Carolina to discuss cancer surgery and treatment and was supposed to meet with 4 or 5 doctors. Duke has this incredible reputation to most people. Anyway, they put us in an exam room and we waited almost 4 hours in this uncomfortable little space before we got someone's attention who figured out for us that one doctor thought she was supposed to wait for another doctor to see us first and then give her the signal that it was her turn. So we got there around noon and so this was about 4pm when we began the round of visits by the 4 or 5 doctors in sequence. I think we got out by about 6:30pm. That just seemed to us so disorganized and unprofessional it confirmed that we were not going to have anything done there!

By the way, I remember my grandfather driving to Lewes for one thing or another (I was too little to care). My sister now lives in Newark, De. and still goes to Bethany periodically to enjoy the sun and sand. Best, Hank