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?

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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.

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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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