35 Male post viral sensory neuropathy/NLD-SNF, 6 months and scared. My story
 

Hey everyone! Long time lurker and I have read a lot of threads here in the past few weeks. I've been debating or not whether to post my story, mainly through fear of hearing things I wouldn't want to, but have decided to do it and hopefully can get some support/help from this great community.

I will try to give enough information without boring you guys to sleep firstly :p So, quick introduction, I am a 35 year old male living in London (just outside in Hertfordshire for people that know it) with no underlying health conditions, generally in very good shape, and my story started on approx January 31, 2020.

Prior to this for background, in late December to mid-January, I'd had a very bad infection/virus which wiped me out (respiratory but was like the worse version of flu ever!). During that time, I was prescribed courses of Doxycycline (first course. 1 a day for 7 days) and Clarithromycin (2 a day for 7 days and my stomach hated these). Incidentally, during that time I had also started taking high doses of Vitamin B12 (1000ug/day) and Vitamin D (8,000IU/day) which I later STOPPED after reading things online about toxicity.

Fast forward to February 10 when the virus has gone, but I know wake up with the outer border of my right foot feeling very weird. I'd say altered sensation rather than numb because I could still feel it, but it was very disconcerting and I believe the term used is Dysesthesia.

About a week later (February 10), the 'fun' starts. My left calf suddenly feels cold (not to the touch) and there are pins and needles/skin crawling sensations which wake me up one evening, and from then it comes on pretty rapidly....

I experience a range of sensory symptoms throughout the body, ranging from: prickling, feeling like there's electricity/static in my body which is making the hairs on my body stand up, finger tips feeling altered sensation like cold, numb or sandpaper, visible spasms/twitching, feeling spots of warmth and wetness on parts of the body, and lots of other things. All fairly transient and for the most part, not localised. From February to April I'd say it was at it's worse, probably a 5-6/10 and me feeling very uncomfortable (rather than in 'pain') and it was a very dark time for me. I'd convinced myself I'd got MS and had read every article known to man on Google which is generally full of doom and gloom. I should have known better. I am sure my anxiety and mild panic attacks exasperated things and made the symptoms worse during that time, but I did see a Neuro in any case in March.

He did the standard strength/reflexes/sensation tests and ordered an MRI of the Brain/Spine (with contrast dye), EMG/NCS and at the same time I got bloods done by my GP (basic tests). Nothing remarkable was shown from any of the tests aside from raised B12 (the stupid supplement) at 1187 ng/L and raised serum free T4 level at 23.4 pmol/L. The Neuro didn't suspect nerve damage or anything sinister and said he expected it to clear up and that some viruses can cause peripheral neuritis. He did not think it was small fibre neuropathy, but I can't recall his reasoning.

I went on my way and while things had definitely settled a bit in April, including my right foot regaining all normal sensation, but thing was was definitely still there. There were days, maybe even up to a week, where I thought this nearly gone and I would be really happy, but then it would appear with avengence with a big flare up and this cycle just kept repeating itself and my anxiety about it all would come flooding back. I went back to the Neuro who suggested 10MG of Amitriptyline for 8 weeks to 'settle down' the sensory nervous system, but it really did nothing apart from help me sleep better, so I stopped that in June.

I went back to him again recently as this cycle has continued and he suggested the only thing he could do was to look at medical treatments such as perhaps pregabalin or gabapentin tablets at low dose as there was no clear neurological explanation, which I haven't taken him up on. He also said something along the lines of people don't always feel normal and it's nothing sinister, so I did feel a little fobbed off to be honest and it does seem like a common theme from everything I've read than consultants can perhaps be somewhat dismissive of our symptoms.

Decided to do a bit of research and find someone in London that specialises in peripheral neuropathy to get a second opinion, and I saw him last week and described my story. I immediately felt much better with this Dr and he mentioned it sounded like a post viral neuropathy (even said it could have been COVID) and that it could be non-length dependent small fibre neuropathy based on my described symptoms and he ordered a repeat of the EMG/NCS and some further blood tests (Vit D, biochemical profile and antibodies). I had the electrical tests last Monday, along with quantitative sensory testing. Everything was normal according to the consultant. The only thing he flagged with caveat was that with the thermal threshold testing for my right hand, it was borderline but he believed that was more to do with the temperature on the day and I tend to agree. It was 36 degrees in London and I was in a room with no air conditioning and my hands were very clammy/sweaty (TMI sorry). I haven't heard anything re. the bloods yet but I will hear back from him hopefully in the next week or so about next steps!

So I guess here we are at present day. This condition continues to be like the stock market, up and down! Some days are absolutely fine (1-2/10) where I don't notice much at all and other days it can flare up and be really uncomfortable, especially when the pins and needles or static/electric feelings hit as they can be anywhere, and I mean anywhere! Some days I will just get some mild twitching, and then other days recently I've had altered sensation in some of my finger tips, gritty feeling in the toes, cold freezing/burning sensation in my heel. They can be there for most of the day or just come and go. Nothing ever seems to be constant, one day I'll have warm feet, the next day fine, the day after slight freezing/burning in the toes, etc. All sensory.

It's affected my mental state quite a bit. It's been approx 6 months now and I think my fiance is on the verge of changing her mind if I keep going on about this. I have all the common concerns that I have read form a lot of you lovely folk on here: will it go? Is it going to get worse? Why has it happened to me so young? How will it affect me raising a family etc. etc. I've read some real distressing stories on here, but also read some very uplifting things. Either way, I have promised myself however this goes, I will not just disappear from the site if things get better, I will let you guys know as I know how much the 'good stories' have really picked me up on bad days.

The only last thing to note is I am taking some supplements per day, but I don't think they are doing much to be perfectly honest, although I think the twitching has slightly reduced: 1 Vitabiotics Wellman Original, 1x1000mg Omega 3 (High Strength) and 1x250mg Magnesium tablet. I've also got back into going to the gym- my strength etc. is all still there and I can lift fairly heavy, but I do sometimes get flare ups a day or 2 after a workout which I have read is fairly common.

So there it is, I hope you're still with me and haven't fallen asleep! I appreciate you reading this, and would welcome any thoughts/advice from anyone. I will continue to update this thread as I go if people are interested, but the main thing I am clinging onto is that peripheral nerves CAN heal and I have seen signs of improvement rather than deterioration so maybe one day this will be a distant memory. Here's hoping!

Firstly, welcome to the forum.
I have peripheral neuropathy, so have a little knowledge about it.
With me, no effected area has ever come & gone.
Once it's there it remains & progressively gets worse.
If you have areas like that I would suspect a pinched nerve.
If indeed you do have it, you need to find the cause.
I may have missed it in your lengthy into but have you been tested for Diabetes.
It it quite often a cause.
In my case it turned out to be Sjogren's Syndrome.

Thanks numbfoot!

I'm sorry to hear yours has progressed :(

Mine isn't a pinched nerve (clear MRI etc.) and my blood work was all ok - no diabetes or anything like that.

Unless they find anything in this next blood test I think the next port of call my be a skin biopsy if that neuro thinks that's the way to go. He didn't want to do something so invasive without re-doing tests and some additional bloods first though.

Welcome LeedsLad84. :welcome_sign: Hope you find an answer.

Kitt

Hey LeedsLad84,

Welcome to the forum.

I will share my thoughts on your excellent and comprehensive account of your symptoms at a later date. But a quick question, what have you got against B12? My understanding is that it is essential for nerve repair and as it is water soluble we can't really overdose on it. I take 1000ug of methylcobalamin a day.

Atty

Hi Atty, nothing against it as such and I would profess I don't really understand too much about the readings but my result was elevated and I read there can be some negative side effects, so stopped taking the high dosage.

It is part of the Wellman tablet I think, but a very small dosage.

This may well be--
 

--a post infectious acute axonal neuropathy.

It's an entity that is fairly rare and not well-described, as most neurologists are more familiar with Guillain Barre syndrome, which is similar in onset but tends to attack the myelin sheathing of the nerves preferentially, meaning those sensory nerves that involve mechanical touch, vibration, and position sense, and all motor nerves. As such, it can cause paralysis and a lot of other nasty things.

If the smaller fiber nerves without myelin sheathing are the target--these nerves subsume autonomic functions, pain, and temperature sensation--symptoms are sensory and autonomic, without the motor functions generally being affected.

The good news with these acute onset syndromes is that they peak and then often recede; the bad news is that they often do not lead to complete recovery, which is often patchy and up and down. But given how slow axons regenerate, you may continue to get slow recovery for months/years, so long as there are no other insults to your nerves.

Autoimmune molecular mimicry mechanisms are often suspected in these cases, which is why it is a good idea for a peripheral neuropathy specialist to do autoantibody tests and perhaps a skin biopsy, to check out the density and condition of these smaller fiber nerves.

I would ask for a skin biopsy. You need a definitive answer because it sounds like SFN. BTW, the Skin biopsy is not really that invasive.

I developed full-body SFN 5-years ago so I know the signs. I hope that's not the case for you but it would be best to find out.

Wishing you luck!

Thanks Glenntaj - I have read a lot of your posts with interest on here and thank you for the great information you provide! I think you're right with what you say - they definitely 'peaked' a month or two after onset and then have slowed down, but appreciate what you're saying re. slow axon regeneration. Are there any supplements that would directly contribute to accelerating that at all?

Will await the results from the antibody tests and see what the Neuro suggest re the skin biopsy, but I will probably push for it!

Cliffman- thank you, I really hope it's not too.

Though many people's mileages may vary--
 

--among the supplements that many neuropathy supplements have found helpful are alpha lipoic or R-lipoic acid, Vitamin B12 (generally in methylcobalamin form, just in case one has methylation issues), fish or flaxseed oil, and magnesium, which many of us seem to be deficient in (though as a malate or chelate--the magnesium oxide preparations out there tend not to be absorbed as well and tend to get dumped into the colon, with some, ahem, loosening effects).

Some also use Acetyl-L-Carnitine or Coenzyme Q10; others here may suggest other types of supplements they've found useful, though one size definitely doesn't fit all in this realm, as a lot of it depends on the type and extent of damage.

In any case, don't expect to see dramatic results overnight; healing from neuropathy, when it occurs, is decidedly not a rapid process.