COVID Induced Small Fiber Neuropathy - long term prospects for recovery?
 

I am brand new so I will write my story.

In Dec 2022 I caught covid on a plane to Thailand. Moderate infection, but I got "pins and needles" in fingers and toes during infection. 7 weeks post infection I got pain followed by cold and numbness in fingers and feet. Many emergency room visits and lots of bloodwork and MRI, etc neurologist diagnosed me with:

Small fiber neuropathy caused by covid

EMG test showed positive. Did not do skin biopsy. Took Cymbalta for 5 months.

Present day is 8 months from first neuropathy symptoms (pins and needles in feet and hands)

Today's symptoms (8 months since infection)

* Partial numbness in ENTIRE body. Scalp, lips, eyelids, ears, torso, penis, legs, toes.
* No pain
* Some brain fog (probably long covid related)

The numbness seems to be progressing, as it is now in my gums and tongue. However, all of my autonomic symptoms have completely reversed (in first 2 months) as follows:

* Heart variability issues
* Inability to sleep (waking up every hour)
* Bladder control problems (wet the bed once)
* tremors in arms and hands

All tests have come back negative. All blood work is ideal, ANA, ANA2, even spinal fluid was tested for everything because I was in Thailand for the COVID infection (suspected a tropical virus in my brain).

My question to the forum however:

Is there any expected recovery from this or will the numbness continue to degenerate or stay stagnant? Any time frame I should look for?

I am now 8 months in, take all the recommended supplements and eat very well. My life is difficult to live because every time I have an itch I remember I have greatly diminished feeling in my skin.

Any and all help, advice or ideas, medical tests you recommend, anything! All appreciated.

Welcome RationalBeing :Tip-Hat: Someone will be along.

Hi, Welcome to the NeuroTalk Support Groups. Sorry it's pretty quite here lately but hopefully others in a similar situation will come forward and post to you.

I'm fortunate that I didn't get covid at all but I do have PN from another cause.

I'm not sure what country you're in but you mentioned going to Thailand so if you're Australian then I would suggest you check into some of the Long Covid / ME CFS (Post Viral Syndromes) clinics that are around in most States here now.
.
There's quite a bit of scientific literature coming out as well.
e.g.,

Long COVID: major findings, mechanisms and recommendations
from Nature Reviews Microbiology


Peripheral Neuropathy Evaluations of Patients With Prolonged Long COVID
from Neurology, Neuroimmunology & Neuroinflammation

I'm sorry that I don't have any real answers for you but I'd really try to get involved with a Long Covid /ME CFS clinic if you can.

Just curious if you had any slight symptoms prior to getting the virus but the virus made it all way worse?

take care,
Lara

p.s. in the meantime check out some past posts for similar symptoms. There's a search function https://www.neurotalk.org/search.php where you can type in specific keywords and find past posts/threads.

Also check the subforum to PN.
PN Tips, Resources, Supplements & Other Treatments

Make sure your B12 is optimal.
https://www.neurotalk.org/1282714-post9.html
from glenntaj regarding optimal levels of B12

STICKY - The Vitamin B12 Thread:

and use practical suggestions regarding the numbness i.e. type of shoes you wear; some use magnesium or other creams to help; taking care with walking etc, depending on how much your neuropathy affects balance etc..

Lara,

Thanks for all the good links and information! I've read most of it, and outlook looks very bleak :eek:

To answer your question - I didn't have a single health issue or symptom before I got COVID. I got pins and needles during the infection, that was all.

I am hoping someone on this forum can report full recovery from a viral infection caused neuropathy. And possibly give a time frame for recovery, tips, tricks, ideas...

Hi again,
Parasthesias are mentioned very often in the post/long covid literature and with similar time lines to what you have written. It seems to be very common in fact. I also read one article that suggested that the severity of the initial illness was a predictor for onset of neuropathy post infection and fatigue played a huge part in that. However, at 8 months in I wouldn't give up and expect a very bleak outcome, plus post viral syndromes tend to differ so much from person to person. Never give up.

Re-reading your original post, I would wonder whether some of those symptoms you're experiencing are transient parasthesias that may eventually subside rather than all due to small fibre neuropathy.

I'm also wondering if you were given any antivirals or other medications while in hospital in Thailand.

Anyway, I was reading some more articles and came across this one that concentrates more on what they called nutraceutical strategies. It's very long.

Peripheral Neuropathies Derived from COVID-19: New Perspectives for Treatment - PMC

______________________


Peripheral Neuropathy in Patients Recovering from Severe COVID-19: A Case Series - PMC
I found that very interesting.

_______________________

This is a very small number of people involved but I wonder what the "neuropathy treatment" was that apparently helped 7 out of 9 patients.I'll try to find out. I don't really understand why you were given the Cymbalta.

Small fiber neuropathy associated with SARS-CoV-2 infection - PubMed
Oh, OK, so here's the free full text. It might tell more.

Small fiber neuropathy associated with SARS‐CoV‐2 infection - PMC

Lara, fantastic information. I've been taking Alpha Lipoic acid and Acytl-L-Carnitine as well as Vitamin D, NAC and just a general B-complex from costco since nearly the beginning. Maybe they have slowed the progression somewhat. I am going to try high dose thiamine starting today.

As to your question - I didn't take any anti virals during the infection last December, only tylenol (paracetemol). My infection was standard I think - I had very high heart rate which sent me to the hospital in Bangkok but then was sent home and rested. I recovered in about 5 days, similar to the flu. I Just had a really nasty cough for about 4 weeks.

I was given cymbalta as first line treatment for neuropathy - for pain and for the anti anxiety/anti depressant part. I had severe pain in my arms and legs in the beginning as well as coldness and I also took gabapentin for about 2 months while the cymbalta started to work.

Thank you also for telling me not to give up hope. It means a lot.

Finally - just to be clear - I have numbness EVERYWHERE in my body. So not sure if this could be called paresthesia unless its possible to have paresthesia in every nerve ending - do you know if this is possible?

I haven't lost my sense of smell or taste, I'd just say everything with a nerve is "blunted" in my whole body.

One more comment.
 

If you showed up with a positive EMG--meaning one that wasn't "normal"--you don't just have small fiber involvement; you have large fiber involvement as well.

EMG and nerve conduction studies cannot ascertain the functioning of the smaller, unmyelinated fibers that subsume the sensations of pain and temperature (and many autonomic functions); it would take sudomotor axon reflex testing, qualitative sensory testing, or most commonly, skin biopsy for that. But EMG/NCV can reveal problems with larger, myelinated nerves that subsume the sensations of mechanical touch, vibration, and positioning, as well as motor functions.

Still, post-viral and bacterial infections leading to neuropathy are not uncommon, though often underdiagnosed. The good news is that often in such acute onset post-infectious neuropathies in which autoimmune molecular mimicry is suspected there can be slow, partial recovery (though it is often VERY slow and VERY patchy).

See:
Acute neuromuscular disorders

Just be careful with the amount of B6 in the B Complex. Some people on this forum have written about having increase in neuropathy symptoms on higher doses of B6. Do get your B12 checked though.

Having numbness like that all over certainly must be very disturbing for you. my daughter had post viral syndrome as they called it here (ME/CFS) after Epstein Barr Virus. Affected her life greatly for many, many years and still a little to this day. She had parasthesias but not like you describe. They were scattered in different places on her body, like patches. They resolved thankfully.

I hope you have a very good doctor who can guide you through all this.

Great info! Yes I had two EMGs and both came back "abnormal" in one of the various tests. So maybe I have large fiber involvement. I had muscle "weakness" as I described it early on, but all the function tests showed full normal strength. The weakness seems to have largely gone away.

Do you happen to know any tests I should suggest to my neurologist? And if you know, could post-infection neuropathy be WHOLE body? I really have loss of sensation (like my skin has clothes over it when I touch) in every inch of my body.

And when you say "very slow" are we talking 5 years to recover? Any supplements or anything that could help?

Thanks Lara. I had my B12 checked very early, it was in the 800s and normal is up to 850 I think.

I got my B6 checked in March and it was also normal. I could check them both again but I have not taken megadoses of B6 or B12 since, just regular B complex once a day and some days I forget.

As for your daughter - I had Mononucleosis as a child so I do suspect covid may have done something with EBV in me, not sure. How did your daughter cure her ME/CFS? Was it just time? I don't seem to have chronic fatigue, just this entire body neuropathy.

Well, she's never really fully recovered with the fatigue part but certainly much better over the years. She certainly isn't very resilient either. It changed her. There are a number of people who used to post here a lot with full body neuropathy although not actually caused by Covid like your situation. It obviously has done something to your immune system. I can't figure out why so much money gets spent on certain crappy things yet they can't figure out how to help people with this disease.

I can't imagine how it must feel all over your body. Would be horrific. I felt pretty good yesterday but did over-do it a lot. Today I'm having a huge flare. I get sick of trying to work out what's caused the flare but I should feel good that I'm not too bad compared with so many people.

Ahh so there are other people with full body neuropathy. I wonder if they got cured and that is why they stopped posting. I'll do some searching. Yes, the full body numbness is almost impossible to deal with. It is like god or the universe is testing me directly.

What is your affliction Lara? 15 years of posting, have you seen any improvement? I really thank you for replying to me. You have helped me immensely with information and support, and I"m sure you have done the same for many others.

the short version
 

Actually I'm pretty new to neuropathy compared with many here but always read here when I could. Lots of invaluable information has been posted over the years. I've only had the PN since around August 2019. I have been in treatment for metastatic melanoma (stage 4). So it had spread in many places.

The first treatment that was tried was a combo of 2 drugs called Targeted Therapy. They target specific genes and the MEK protein. I have mutation in BRAF. I wasn't able to continue that after about 10 days approx. as it made me extremely ill in hospital. Dabrafenib and Mekinist.

The PN began almost immediately and it was sudden and horrible. Swelling and pain started in toes and up legs, same with finger tips and lower arms. I then began a long and exhausting few years on a different treatment called Keytruda, an Immunotherapy. Currently "no evidence of disease" but scanned constantly. Drives me insane. My neuropathy hit a plateau for some time but has progressed again now. Up until not long ago I was able to do pretty much everything. I just worked around my neuropathy flare ups. I think the physical hard yard work that I did actually helped me through the past few years in treatment. Kept me strong physically plus eat to suit my body the best that I can. That helps, plus good shoes!!! Now I can't do so much unfortunately.

I've been around for a long time on the forums as have many others. Many of us had children of the same age and we were supporting each other as they were dealing with certain conditions and differences that were affecting their lives. Some of us hung around dealing with our own conditions.

thankyou for the thanks and for asking. Always happy to try to help if I can.

Just an update for the threat:

I recently tested positive for ANTI-MAG antibodies. I did not do an ELISA test, but an antibodies in blood test. My result was 46ng/ml with reference range of 0-3, so way way out of range. I am only 43 years old and have been suffering through 10 months of whole body neuropathy thought to be caused by covid.

I do have spasms in my left leg in addition to the loss of sensation on all skin and in my gums too. Could be early symptoms.

I will try to do an ELISA test if one is available, as soon as possible