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DiscussionI am curious to know other’s stories of post viral neuropathy.
Neuropathy | Last Active: Aug 8, 2022 | Replies (62)Comment receiving replies
Replies to "Hello @tgk, Welcome to Connect. According to her member profile, @cindy62 was last active on Connect..."
Hi John,
Thank you for your response. I developed what is believed to have been a mosquito borne illness in April of 2017.
It began with a burning sensation in my feet when they touched the concrete after taking off my shoes one day after coming in from the fields. I was 27 and farming in the Caribbean. It felt like lightening shooting up my legs and I immediately had to sit down and put my socks back on. Within a few hours I had a high fever (104) and rigors and extreme joint pains. This happened every night for several days then went away. I had the exact same episode a month later. This recurred for 6 months and gradually the joint pains and neuropathy in my feet lingered between febrile episodes. I flew back to the states where I was admitted to the hospital and every viral, bacterial and parasitic illness they could think of was ruled out. All they could find was a transiently positive ANA and transient anti fibrillarin antibody and low C3. They referred me to rheumatology who said I didn’t match any AI disorder and tentatively dx me with UCTD. After several months of no fevers during flares I had one more episode exactly like the others with high fever, rigors and extreme back and joint pains. This did coincide with me taking hydroxychloroquine for suspected UCTD. I believe if this was malaria this could have been a reaction from the die off. My symptoms quit deteriorating after this incident and improved to a new normal. for the next two years my symptoms continued to peak every month or so with no more return of the fevers. They consist of joint pains, autonomic dysfunction, burning and pain in feet up to knees and hands and ears. I i had peripheral wasting as well. I saw ID at Johns Hopkins who said this seemed like AID triggered by either malaria or unknown mosquito borne virus. Neurology at Hopkins did electrical testing and dismissed me when this was negative. I was finally seen at Mayo where I was dx with ‘possibly immune mediated’ length dependent small fiber peripheral polyneuropathy.
My symptoms went into remission during pregnancy and now I am 5 months post partum and the symptoms have been gradually returning.
Since the immune system is suppressed in pregnancy I strongly believe now that this is immune mediated.
My flares are made much worse by echinacea, elderberry and other immune stimulants or when I am ill and my immune system is activated.
I would love to meet others who have suspected Apparently Auto Immune SFPPN, especially post infectious.
Thanks again John and I’m sorry this post is so long!
Tracy