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!

Did you take any medications for the virus like Levaquin or Cipro?

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Cindy, my experience with SFN sounds exactly the same. I wondered if my taking Tamilu had any connection. I have the burning, tingling in my hands and feet along with the muscle twitching in my legs and night time feet/leg cramps. It came on suddenly 18 months ago. I initially experienced some other slight transient symptoms and and still do but they cine and go. I take 300mg. gabapentin at bedtime and various supplements during the day which I think help. I exercise and drink no alcohol, but I have no weakness, and feel that my neuropathy has improved over time. I have had a few flare ups but possibly with the virus- caused neuropathy the affected nerves improve with time? My neuro classified me as ideopathic but after ruling out other causes believe mine was caused by a virus. I hope you also improve over time.

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@jager5210

Did you take any medications for the virus like Levaquin or Cipro?

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I actually did take Cipro for about a week for a bacterial lung infection that I had at the same time. The parathesias were already present, but the Cipro seemed to make it worse. The specialists that I saw thought there might be a connection but seemed to feel that virus was the main cause of the neuropathy.

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@helennicola

Cindy, my experience with SFN sounds exactly the same. I wondered if my taking Tamilu had any connection. I have the burning, tingling in my hands and feet along with the muscle twitching in my legs and night time feet/leg cramps. It came on suddenly 18 months ago. I initially experienced some other slight transient symptoms and and still do but they cine and go. I take 300mg. gabapentin at bedtime and various supplements during the day which I think help. I exercise and drink no alcohol, but I have no weakness, and feel that my neuropathy has improved over time. I have had a few flare ups but possibly with the virus- caused neuropathy the affected nerves improve with time? My neuro classified me as ideopathic but after ruling out other causes believe mine was caused by a virus. I hope you also improve over time.

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Thank you for your response. It is encouraging to know that you feel your symptoms are improving. I know it is possible for peripheral nerves to heal overtime – hopefully that's us!

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Hello @cindy62, I would like to add my welcome to Connect along with @helennicola and @jager5210. There is another discussion where you might want to post your symptoms and question so more members with neuropathy see it. I have idiopathic small fiber PN but am pretty sure it was not caused by a virus or flu shot since I've had it for over 20+ years. I thought mine could have been related to taking statins but I'm really not sure. I posted my story earlier on Connect here:
https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985
Here are two discussion that might be helpful to post questions and to meet other members that share your symptoms.

> Groups > Neuropathy > Living with Neuropathy – Welcome to the group
https://connect.mayoclinic.org/discussion/living-with-neuropathy-welcome-to-the-group/

> Groups > Neuropathy > Small Fiber Neuropathy?
https://connect.mayoclinic.org/discussion/small-fiber-neuropathy-3/

What have you found that helps you? Are you taking any medications?

Liked by cindy62

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@cindy62

I actually did take Cipro for about a week for a bacterial lung infection that I had at the same time. The parathesias were already present, but the Cipro seemed to make it worse. The specialists that I saw thought there might be a connection but seemed to feel that virus was the main cause of the neuropathy.

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Cindy, I actually had composed a lengthy reply on Cipro & Levaquin which are members of the fluoroquinolone class of medications. Yes they do cause neuropathy. Are doctors protecting the pharmaceutical industry? I'm pretty damn certain they are. Google it. There's tons of info and probably class action suits still looking for supplicants. It sounds like you have a pretty clear case of being treated for a virus (which antibiotics do nothing for) with a drug which should be reserved for serious cases like the plague & anthrax. Good luck. Hope this goes through as my other post just disappeared.

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@jager5210

Cindy, I actually had composed a lengthy reply on Cipro & Levaquin which are members of the fluoroquinolone class of medications. Yes they do cause neuropathy. Are doctors protecting the pharmaceutical industry? I'm pretty damn certain they are. Google it. There's tons of info and probably class action suits still looking for supplicants. It sounds like you have a pretty clear case of being treated for a virus (which antibiotics do nothing for) with a drug which should be reserved for serious cases like the plague & anthrax. Good luck. Hope this goes through as my other post just disappeared.

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Jager, I was prescribed the Cipro because of a bacterial infection that was only sensitive to flouroquinolones. The symptoms had already started after a previous viral infection. I haven’t ruled out that Cipro may have aggravated the situation…..my main focus now is not what caused it, but learning how to manage the symptoms; and praying that they improve. I am curious to know what has helped others. Thanks for your response.

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Hi, @cindy62 – just wanted to clarify what you were meaning about neuropathy following a virus. I had postherpetic neuralgia after having shingles, a virus caused by the chickenpox (herpes zoster) virus https://www.mayoclinic.org/diseases-conditions/postherpetic-neuralgia/symptoms-causes/syc-20376588. Is this what you had in mind?

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Hi Lisa, The specialists that I saw felt that I had an immune response to a viral illness. The antibodies that I created mistakingly attacked my nerves creating the neuropathy symptoms. So, it is different than postherpetic neuralgia. I have only come across a few others who have had this particular type of neuropathy. Apparently it is on the “spectrum” of Guillain Barre.

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I had Guillen Barre 19 years ago, due to Epstein Bar Virus and CMV. After Guillen Barre, my legs and feet were numb, with tingling and super sensitive. After 3 years those sensations improved, didn't completely disappear, but were much lighter. Since 2013 I'm having intense feet pain, numbness, and constant tingling sensation. Peripheral neuropathy was diagnosed by Nerve Conduction Study. My Immunologist says my neuropathy is not related to my history of Guillen Barre ( viral). It was diagnosed as Idiopathic. They think is related to my lumbar spinal stenosis and radiculopathy.

Liked by cindy62

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@cindy62

Hi Lisa, The specialists that I saw felt that I had an immune response to a viral illness. The antibodies that I created mistakingly attacked my nerves creating the neuropathy symptoms. So, it is different than postherpetic neuralgia. I have only come across a few others who have had this particular type of neuropathy. Apparently it is on the “spectrum” of Guillain Barre.

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Hi to anyone who may be able to shed light on treatment of postherpetic neuralgia (PHN).
I was diagnosed with severe shingles the end of January 2019 from my breast bone all the way around to my spine. It then turned into cronic postherpetic neuralgia.
I've been on most all medications that are supposed to be helpful in repairing the damaged nerves. To no avail.
I've experienced severe side effects from all of them & unable to use or get a benefit as a result.
There also have been no pain medications that have been helpful. Therefore I take none.
I finally, after 9 months had an appointment with a cardiologist that feels he will be able to give me injections that will deaden the nerves on a permanent basis.
The reason I saw the cardiologist was that I had four episodes of what I believed may be heart-related issues when in fact they were spasms from severe costochondritis through my chest region. I have sense had a contrast dye cat scan on my heart and on Monday will have a contrast dye MRI on my spine. I'm being told that they may be able to see fluid within my spine that may be helpful in determining how to address the PHN on a permanent basis as well as rule out other causes and get me out of this severe pain. It has been entirely debilitating to me for 10 months. I am in pain every minute of every day in the entire right side of my back and under my right breast. I am desperate to hear if anyone has found a means of relief from this.
I also was diagnosed with polycythemia vera in June and feel that we may possibly finally have a grasp on that. As a result of these illnesses I have no energy in or ability to exercise due to the pain that it creates from even the most mild forms. As a result I have put on approximately 30 lbs which of course makes the overall worse by the lethargy that it has created.
Please help if anyone has any insight to a cure.

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@kimitammy

Hi to anyone who may be able to shed light on treatment of postherpetic neuralgia (PHN).
I was diagnosed with severe shingles the end of January 2019 from my breast bone all the way around to my spine. It then turned into cronic postherpetic neuralgia.
I've been on most all medications that are supposed to be helpful in repairing the damaged nerves. To no avail.
I've experienced severe side effects from all of them & unable to use or get a benefit as a result.
There also have been no pain medications that have been helpful. Therefore I take none.
I finally, after 9 months had an appointment with a cardiologist that feels he will be able to give me injections that will deaden the nerves on a permanent basis.
The reason I saw the cardiologist was that I had four episodes of what I believed may be heart-related issues when in fact they were spasms from severe costochondritis through my chest region. I have sense had a contrast dye cat scan on my heart and on Monday will have a contrast dye MRI on my spine. I'm being told that they may be able to see fluid within my spine that may be helpful in determining how to address the PHN on a permanent basis as well as rule out other causes and get me out of this severe pain. It has been entirely debilitating to me for 10 months. I am in pain every minute of every day in the entire right side of my back and under my right breast. I am desperate to hear if anyone has found a means of relief from this.
I also was diagnosed with polycythemia vera in June and feel that we may possibly finally have a grasp on that. As a result of these illnesses I have no energy in or ability to exercise due to the pain that it creates from even the most mild forms. As a result I have put on approximately 30 lbs which of course makes the overall worse by the lethargy that it has created.
Please help if anyone has any insight to a cure.

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Hi @kimitammy, Welcome to Connect. It can sometimes be overwhelming dealing with the pain which makes everything else secondary. I can relate to the fatigue and lethargy when I'm not feeling well. I'm hoping some other members with PHN will be able to share what has helped them. Here are a few sites that may provide information on treatments for PHN.

Medical News Today: Postherpetic neuralgia: Treatment, symptoms, and causes
https://www.medicalnewstoday.com/articles/160253.php

New Guideline Evaluates Treatments for Postherpetic Neuralgia
https://www.aan.com/PressRoom/Home/PressRelease/231

You mentioned you were also diagnosed in June with polycythemia vera and the doctors may finally have a grasp on it. Have you started a treatment? Just wondering if that may be part of symptoms of a lack of energy and the lethargy.

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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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@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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Good afternoon @curtj, Welcome to Connect. We are a community of patients, parents, providers, and caretakers, not medically trained but very experienced in what has happened in our bodies and what steps we have taken to move on from the diagnosed illness or condition. It appears that you are exploring information for your wife as written by another member, @cindy62 who had opened a discussion in October 2019. It is likely that @cindy62 is not active at this time. If you would like to find information neuropathy information go directly to:

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You will find a post on the right-hand side of the heading. It will say Oldest……followed by Newest. So for the latest posts tap Newest. You will also find more than 100 different Discussions in the Neuropathy group listed when you click on Discussions. It might be best to go through them and see if any other discussions connect with your question.

What exactly is causing your wife the most serious symptom that is concerning you? I realize the dismay you must feel at not even getting a diagnosis. I think you might find help on Connect by using the search tool at the top right directly to the left of your photo. Type your keyword in the box and press the magnifying glass. Take a look.

I will be waiting for you to fill me in a bit more and then while you are searching the discussions, I can see just who might be lurking in the wings with a very similar journey and a happy outcome.

May you and your wife be free of suffering and the causes of suffering.
Chris

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@artscaping

Good afternoon @curtj, Welcome to Connect. We are a community of patients, parents, providers, and caretakers, not medically trained but very experienced in what has happened in our bodies and what steps we have taken to move on from the diagnosed illness or condition. It appears that you are exploring information for your wife as written by another member, @cindy62 who had opened a discussion in October 2019. It is likely that @cindy62 is not active at this time. If you would like to find information neuropathy information go directly to:

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

You will find a post on the right-hand side of the heading. It will say Oldest……followed by Newest. So for the latest posts tap Newest. You will also find more than 100 different Discussions in the Neuropathy group listed when you click on Discussions. It might be best to go through them and see if any other discussions connect with your question.

What exactly is causing your wife the most serious symptom that is concerning you? I realize the dismay you must feel at not even getting a diagnosis. I think you might find help on Connect by using the search tool at the top right directly to the left of your photo. Type your keyword in the box and press the magnifying glass. Take a look.

I will be waiting for you to fill me in a bit more and then while you are searching the discussions, I can see just who might be lurking in the wings with a very similar journey and a happy outcome.

May you and your wife be free of suffering and the causes of suffering.
Chris

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Thank you Chris!
For the last four months, she has suffered with a very intense, burning pain that started in her neck. It became systemic as it traveled to her mouth, throat and tongue with burning, tingling sensatons that were unbearable. It traveled throughout her body to her chest, arms etc. She practically lived on ice packs for three months. This all started in early March after a trip to Florida and she caught a bad respiratory cold. She was tested for covid (negative) and for the antibody to see if it was present. (also negative) She is ultra sensitive to medicine and had been on Gabapetin (had a reaction to it)at a low dose of 600 mg/day. They wanted to increase it but she was having more pain. She was on Tramidol and has since come off as well as Lyrica. Lyrica is only 25 mg/day down from 50 mg. She reduced it per her pain Doctor two days ago and now is in extreme pain but are told that the dose was too low to have side effects. She did have a three plus week of reprieve that ended two days ago. She has so many tests and no real diagnosis or prognosis for what she will be dealing with. Her heart rate and BP is high and this afternoon made a trip to Urgent care as a result. She had two episodes of Sinus Tachycardia while at Urgent Care. All they said is get her to a hospital if it happens again. (She has been treated for Ectopic Atrial Tachycardia) Short of getting on a plane and heading out to Rochester, we are at a loss for what to do next…

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