I am curious to know other’s stories of post viral neuropathy.

Good afternoon cwallen9.

So, you are the one who fell in love with Bethany Beach. We had a summer beach house that we managed about 3 houses from the beach. We used to play Pinochle with neighbors until 3 in the morning. Is Bethany Beach still a dry community? I also lived in Laurel, Bethel, Milford, and Dover. Seems like a lot of places. We also spent time in Lewes and Dewey. As a West Coast person, my years in Delaware were eye-openers as I met folks with huge families......who came to reunions every year with 100 or so relatives. I spent 15 years on faculty at DTCC in both Georgetown and Dover. I was always introduced as the girl from California. Don't know quite what that meant.

May you have contentment and ease.
Chris

Thanks so much Hank. There are many other meds in my arsenol, strong pain meds doctors don't hand out to many patients and toxic meds. It's a quality of life issue that I agonize over daily. There is a lot of judgment out there but as I've said before, what people don't realize is that these meds don't take away pain, they just help patients tolerate or cope with it. This is one thing that helps get me through: Romans 8:18 "For I consider that the sufferings of this present time are not worthy to be compared with the glory that is to be revealed to us." Blessings to you and your precious wife, Sunnyflower

Yes, I am the Peggy in Bethany Beach. It's not dry, but it is too upscale for serious drinkers and party-goers, they like Dewey. The hospital is in Lewes but I understand that it used to be a party town. Rehoboth Beach has become a gay mecca, Fenwick Island has the shipwreck museum, the beaches around the convergence of the Indian River and the Atlantic Ocean are popular with fishermen and surfers. I love it here. I am from Los Angeles. Peggy

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

Hello @tgk, Welcome to Connect. According to her member profile, @cindy62 was last active on Connect in January this year. Hopefully she will see your response and reply to your post here.

Do you mind sharing a little more about your symptoms and diagnosis, tests you have had?

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

I am happy to share any test results or other information that could be helpful to others

Hi Tracy, You mentioned you think it may have started as a mosquito borne illness. I was wondering if you have done any research or comparison of your symptoms with any of the known types of mosquito caused diseases. I know there are a lot of them just by doing a little searching so I'm guessing you've been down that road before.

-- Mosquito-borne diseases | World Mosquito Program: https://www.worldmosquitoprogram.org/en/learn/mosquito-borne-diseases
-- Mosquito-Borne Diseases | NIOSH | CDC: https://www.cdc.gov/niosh/topics/outdoor/mosquito-borne/default.html
-- Chikungunya Virus: https://www.cdc.gov/chikungunya/index.html

Thank you for the resources John! This is the first rabbit hole I went down with the onset of this illness. I did end up getting tested (12+ months later) for Chikungunya AB IGG/IGM, Dengue Fever IGG AB, Zika Virus RNA by PCR, West Nile IGG/IGM AB, Arbovirus California, Arbovirus Eastern Equine, Arbovirus Western Equine, and even had a special lab look for the newly recognized Mayaro virus. All of these came back negative. I also had several negative Malaria smears and antigen testing.
It is possible it was one of these but was negative due to the time that passed but as ID at Hopkins said, these are just the few mosquito borne viruses we have western names and serology for out of the countless ones that exist. She seemed to think it was slightly more likely it was Malaria I may have gotten two years prior when I was living in India resurfacing than a virus. She said my recurring symptoms, and inability to pinpoint the initial infection were common for her to see as peoples "end of the line" ID specialist. She said whatever the infection was, she believes it is gone and this is now immune mediated and my 'new normal'. I do still really want to know what caused this though. Thanks again John!

Hi folks,

It's been great to stumble onto this community -- I've learned a lot from reading everyone's stories. I was hoping to ask for some advice dealing with a similar situation, possibly post viral neuropathy (though not for sure -- no official diagnosis). This is fairly recent for me & dealing with it has been confusing so any advice from the experienced would be so helpful.

Symptoms:
Following a stubborn but not intense respiratory illness (swollen throat for 1-2 months, but otherwise not even a fever or fatigue), I started developing paresthesias in my arms &/or legs. So I might variously feel like they're vibrating, being electrocuted, or about to go numb. The worst part is probably sleep, since perhaps 2-3 nights a week I wake from sleep with vibrating arms or legs -- the feelings are worst when I am still, though on bad days I feel buzzing/crawling when I'm up & about. On the other hand, on good days I feel completely normal & on medium days I've had success taking away the worst symptoms with a low Lyrica dose.

It's been about 6 months of such feelings, with some ups & downs but no very obvious trajectory. I might have other symptoms (small muscle twitching/fasciculations, "lump in the throat"/globus sensation, muscle pain, joint pain) but it's hard to be sure.

Tests:
I had a modestly abnormal nerve conduction study about 5 months ago & plan to repeat it soon. Otherwise, basically everything else looks normal (blood sugar, thyroid, CBC, ESR/CRP, ANA, COVID antibody [weeks after my respiratory conditions], Celiac...).

Questions:
(a) Are there any conditions I should look into beyond "post viral neuropathy"?
(b) Is it even realistic to ever expect a more specific diagnosis? It seems a number of people here don't get something specific
(c) Should I worry about symptoms getting (slowly) worse? & how might I tell given the daily ups & downs?
(d) How can I tell if certain secondary symptoms (e.g. muscle twitches) are caused by my main condition (e.g. nerve damage) or are unrelated (e.g. stress/sleep issues)?
(e) I guess finally, how do I get physicians to take the problem seriously? I think from their perspective, a fairly young person walks in & says he has strange sensations, but has no difficulty walking, no numbness, no real "pain," & basically no abnormal tests except one (now old) somewhat abnormal NCS, so overall doesn't seem critical.

Thanks for listening & sorry for the long post. I'm not looking mostly for specific answers, but any sort of words of wisdom on how to handle & think about a condition like this. Appreciate your thoughts 🙂