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I am curious to know other’s stories of post viral neuropathy.
Neuropathy | Last Active: Aug 8, 2022 | Replies (62)Comment receiving replies
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.
Replies to "Hi Lisa, The specialists that I saw felt that I had an immune response to a..."
Hi,
I just created an account so I could respond to you- I know this is old but hope you see this! I could have written your post and would love to connect.
I developed a length dependent SFPN following a recurring unknown viral illness in the tropics. I was seen at many hospitals including Johns Hopkins and eventually at Mayo Clinic.
The specialists also believe mine is an immune response similar to Guillan barre syndrome. I have never met anyone else with this diagnosis and after years of searching for answers would love to connect.
Peace,
Tracy
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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.