Post viral neuropathy

Posted by cindy62 @cindy62, Oct 20, 2019

I am curious to know other’s stories of post viral neuropathy. I acquired a peripheral neuropathy out of the blue after a viral illness; and, have been dealing with it for almost a year. My symptoms include tingling, burning, and weakness in arms,hands, feet, and lower legs along with muscle twitching. I am trying to limit prescription medications and rely more on supplements, exercise, etc. Looking for some positive feedback on this crazy ailment!

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.

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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?

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@notastall78

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?

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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

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@jesfactsmon

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

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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.

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@pfbacon

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

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@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

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@curtj

Cindy,
What was the outcome/Success of your situation? My Wife has been told she has post viral neuritis and after two CAT Scans, MRI's, Lumbar Puncture, Skin Biopsy and over 75 blood tests, they can't pin point the diagnosis. She has been seen at Dartmouth and Brighams Womens Hospital. We are lost….
Curt

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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

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@notastall78

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.

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Hello @notastall78, welcome to Connect. I'm sorry you've been having problems since June. Have you been officially diagnosed by a Neurologist or general practitioner? Which Dr will you see next week? I have Small Fiber Peripheral Polyneuropathy which was discovered via skin punch biopsy by my Neurologist. After the results came back for SFPN the next step was to determine my underlying cause. I had extensive blood testing and genetic testing. The work up took 2 months after which the only discovery was B12 deficiency. All lab reports slightly differ. My low B12 number was 214. I immediately began B12 injections every 2 weeks for several months. My blood and methylmelonic levels were rechecked every 3 months until I was regulated at which point I switched to oral supplementation. Low B12 or high B6 can cause neuropathy. If caught early enough, you may be able to bounce back better/quicker with less damage verses long lasting permanent nerve damage. I'm glad you're going to the Dr. for proper care and factual testing. Best of luck to you and let me know if you'd like any more info about symptoms. treatment. after effects, etc…
Be well,
Rachel

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@cindy62

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

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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"………

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@cindy62

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

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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

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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

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@pfbacon

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

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@pfbacon Peggy, it's surprising to hear about some who travel quite a bit while dealing with so much pain from neuropathy. My wife suffers every day with her pain and whatever energy she gets in a day is usually used up by the coping. We have traveled to see family since she had PN, and the last time was Feb. '19 and now she has gotten worse the past year and there seems like no way she would be able to make the drive (can't fly due to lymphedema) to New England from Nashville.

So you live at Bethany Beach. I believe I mentioned some weeks ago to you that my family went there when I was a kid as we would visit my grandparents in Millsboro (15 miles from Bethany) most summers. Some of my very fondest memories of childhood. I too am a beach lover. Best to you, Hank

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@pfbacon

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

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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.

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