Post viral neuropathy?
 

I'm looking to see if anyone here has had a similar experience, and if they've found anything that helps, or if they've had a diagnosis made.

I'm 31 and female. Back in January I had a high fever (tested negative for covid), I was aching all over and had a sudden onset of all over body fasiculations and altered sensation in my feet. I've had tons of blood tests, all normal except for b12 which I've since supplemented with injections. It's now been 8 months and I'm still not well, I still have twitching everywhere, pins and needles and tingling constantly in both feet, burning pain along the inside of my right foot and up my shin, numbness on one side of my face, and buzzing, vibrating and crawling sensations in my arms and legs. I've had an EMG which was normal, a nerve conduction test which was normal, and an MRI which showed some vague white spots which probably aren't of any significance. All the tests are fine but I've never felt so ill 🙁. My neuro just doesn't seem to know what to do with me anymore and is calling it "post viral syndrome" that should improve on its own, but it doesn't seem to be improving at all. The facial numbness is a relatively new thing so im worried I'm actually getting worse.

My mobility is affected, I can't drive because of my bad foot and I can't work. Has anybody been through similar and had an official diagnosis or found anything that helps? I feel so lost and frightened because things literally changed overnight 😞.

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

I was diagnosed with post viral syndrome almost two years ago. It took months to get appointments and tests run. After all the blood and nerve tests. I have a lot of tingling and numbness but not as bad as you describe. I have headaches nearly every day. I got my symptoms following having the flu in April of 2019. I see both a neurologist and an immunologist. The immunologist discovered that I have an immune deficiency which is probably why I developed post viral syndrome. He has suggested that immunoglobulin treatments might help but it is difficult to get the insurance companies to cover.

Hey Catonabroomstick,

Welcome to the Forum. I'm sorry to hear of your terrible symptoms and the stress you've experienced that accompanies those symptoms. I see the pain and anguish you are going through. I think having that pain and anguish acknowledged is important.
Autoimmune diseases can be invisible to an observer and symptoms can be dismissed as fictional and then the motives of the sufferer for creating that fiction can be called into question. The sufferer can often sense this and internalise that pain.
So its important to be heard and understood. You will find sympathetic voices here.

Best wishes,

Atty

Welcome to the NeuroTalk Support Groups.

I'm sorry you're having such a terrible time. I have to wonder if you've spoken more in depth with your Neurologist about these white spots showing on your MRI.

Was your B12 ever retested after you had the injections? While you're dealing with these current symptoms, make sure that if you're getting Vitamin B12 injections that they are methylcobalamin and not cyanocobalamin.

You can supplement yourself with oral B12 over the counter of course. There is an abundance of information about B12 in the "Sticky" post at the top of the threads here and there's information about what is "normal" B12 level in some places is in fact too low.
STICKY - The Vitamin B12 Thread:

This post on that Sticky is from glenntaj and has always been one that I revisit. Although it was addressed to someone else with some different symptoms, it does address "normal" B12 levels very well.
https://www.neurotalk.org/1090998-post681.html
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I'm also just curious if you deal with migraines?

My neuro said it was probably migraine related (I've had migraines since I was a child).

What's wrong with cyanocobalamin injections? I'm not sure what I've been having.

I just wish I knew how I could improve this. If it's post viral, surely I would be getting better now 8 months on? 😞 Has anybody had similar here?

Do you know why your B12 was low? Understanding that may provide insight to your overall situation. If you are low on B12, there's a chance other nutrients are low or low normal. They normally don't test everything and blood serum is not always the most accurate method of testing. B12 is important to restore but you should also make sure you're getting the other B vitamins. They also support nerve health. A good B Complex that has the bio-available forms of B1, B6 and folate would be my choice. I echo what Lara stated about the type of B12. The methyl form is more bio-available. That's important if your body cannot convert the cyano version into a usable form.

Too little copper and too much zinc can effect nerves. Iron,copper and zinc need to be in balance.

There are reasons for low B12....being a vegan, celiac disease, gluten intolerance, malabsorption issues, and other digestive issues.

Nerves do heal slowly. Sometimes, you progress then plataeu for a while. And at times, it may feel worse for a bit as the nerves are healing.