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.

glad i found your post
 

I tend to believe that glenntaj may be prophetic here. I put my first post in today and have the moderator approves it, you can read my quite similar story. I guess I am fortunate because this odd affliction (mine is almost the same as yours) hit me at 56. I think skin biopsy would be a good course of action. In the end, we probably DO have SFN. We can hope that it will progress as glenntaj has suggested. I almost want to give up hope as it CAN be a let down, and pursue acceptance instead. When I am expressing optimism, I say I will use this affliction to keep after my general health and work to learn mind over matter. My wife has spinal stenosis and she if very good at mind over matter. I have a very good friend who also suffer from chronic back pain. (This is maybe worse than SFN...maybe.) He has learned to manage that condition by maintaining his core strength. But he will ALWAYS have it.

If it is a sensory neuropathy, it should not lead to mobility problems. Having a family might be a good distraction.

Hi everyone

Just to update, the previous week was a good one. Symptoms were overall dampened but still not fully gone.

I started on a bunch of supplements last week too (the only thing I was taking previous to this was a Multi Vit, 1 fish oil capsule and Magnesium Oxide), so will see how they do and I will of course keep everyone up to date.

Due to have a follow up with my Neuro next week as well where I am sure he'll go through the EMG/NCS results, and also blood results around the antibodies etc.

For anyone interested, below is the supplementation guide I am following atm. If anyone has any thoughts/advice, would be happy to hear as I have just come up with this myself based on the numerous posts I've read here, including Mrs D's supplementation thread. I'm especially curious to know if I am supplementing the right way round, i.e. the right things in the AM on empty stomach vs. PM with food.

AM (on an empty stomach)

1 x Wellman Original Multivitamin (I will drop this soon)
1 x Magnesium Citrate (200mg)
1 x Alpha Lipoic Acid (100mg)
1 x Benfotiamine (300mg)

PM (with food)

2 x Omega 3 Fish Oil (1000mg)
1 x Evening Primrose Oil (1000mg)
1 x Grapeseed Extract (100mg)

For vitamins & supplements.. with food or not..
take vitmains with food or not - Google Search

Hey Leeds,

It can't have been easy for you coming on here, talking so openly about a difficult issue. A proud Yorkshire man born during the miner's strike having to admit to living in a soft, southern, big jessie county like Hertfordshire where the hardcore football team is Watford!! But joking aside, thanks for the update.

Interested to see your supplements. Surprised you're not taking a Vitamin B Complex, B6, Folic Acid, B2 all essential in my view. Especially surprised you're not taking B12. That measurement you had previously would have been affected by your tablet intake. You have to stop ingestion for 3 days to get an accurate picture. B12 is water soluble so you can't in the real world overdose. I take 1000ug of methylcobalamin daily. I prefer to take Omega 3 Algae Oil rather than fish oil to avoid heavy metals. You can also add Flaxseed and Chia seed to food to boost different types of Omega 3. I avoid Evening Primrose Oil because of its pro inflammatory Omega 6 but would like to hear your reasoning you take it. I've never tried Mg, I must admit I intended to but forgot! I also take coQ10 and Curcumin (from Turmeric) Creatine and Alpha Lipoic Acid (600mg). I've pretty much taken every supplement suggested on this site but those are the ones that I now take. I will add Mg

Quick question, are you seeing a Neurologist privately or on NHS?

Best wishes,

Atty.

Hey LeedsLad,

I'm a 38yo male in NYC. I have been suffering from autoimmune SFN for several years. I had a low titer ANA with autoimmune symptoms (migraine, mild joint pain, fatigue) for years, then developed a stomach bug in Costa Rica and the neuropathy came on fast and strong immediately afterwards. I have a technical background and have spent A LOT of time researching and reading about this condition and talking to specialists.

I can tell you that what you describe is a typical post-infectious autoimmune neuropathy. Most likely, the virus put your immune system into high-gear. There is some autoimmune/autoinflammatory mechanism that has been triggered.

The good news is that sometimes, with the right treatment, these things can go away. Not always, but it can happen. The bad news is that you are likely going to require some form of immunotherapy. In your case, the go-to first-line treatment in a situation like this is IVIG. Unfortunately, this is quite difficult obtain in the UK.

I would recommend

1.) talking to a specialist about IVIG and getting the process started ASAP.
2.) trying a course of prednisone as a "proof of concept". Often times a tapered methylprednisone pack can lower the inflammation enough such that you achieve temporary remission of syptoms, which would proove its autoimmune
3.) If you absolutely cant get IVIG, there are immunosuppresive approaches you can take, which you can talk to your dr about (Cellcept, Rituxin, Azathioprine).


I will check this board and can help answer any questions. I've helped quite a few people in the FB SFN group get their bearings straight and I really have dedicated my time towards helping people with this disease. It is amazing the lack of knowledge and understanding your general neurologist has with regard to this. They have such trouble even telling the difference between genetic, toxic, autoimmune or diabetic neuropathy, let alone treating them.

Ha ha

Something like that.

Thankfully, I still have all the Northern in me and religiously follow Leeds United.

TBH, I am new to the world of all this supplementing, so I am sure things are missing. I didn't add the Vitamin B stuff in due to the B12 result previously (I know its old) and that there accounted for in my multi vit. Definitely open to changing down the line though, but I have added stuff for the moment based on the forum and will see how I go before I add/remove anything.

I add Flax and Chia seeds to my daily smoothie, so covered on that front.

Re. EPO. It is the one I am most unsure on, but I read on here oils are good for nerve pain and I saw Mrs D reference it once, but you are right about the Omega 6 inflammation so I will probably stop that one now. I am certainly no expert here :)

My Neuro is through private also

Hey thanks a lot for this. I will mention all when I speak to my Neuro next and report back!

Hi man, I just wanted to ask a few more questions around this if that's ok.

From what I've read, IVIG is most useful in tackling the actual infection, however in my case I got rid of this and then the peripheral neuropathy started which has most likely caused this non length dependent small fibre damage.

I guess maybe I would like to understand how IVIG can actually help the above, or if I am maybe getting the round end of the stick?

Or is the main purpose here to potentially dampen the autoimmune/autoinflammatory mechanism which in turn would arrest or even reverse symptoms?

Can relate to this exactly with my experience, however not following an illness. 35 here also and up in Glasgow.

Only thing found with me was low folate which has been corrected. Spinal MRI clear. Had many neurological symptoms, which have come and went. Tethering over what it could be. I've went through the lot from stress to MS, to peripheral neuropathy caused by folate deficiency. Still no idea.

Going through NHS at the minute with neurologist, but painfully slow (pun intended). Frustrating thing is I have private healthcare now through a job promotion and can't use.

I am also going through a supplement programme shortly, and will update as to how this goes. Main ones being R-ALA, omega fish oil, magnesium, acetyl l-carnitine and a host of B vitamins.

Hope all is well with everyone in the meantime.

Keep us posted! Have you had an MRI of the brain and spine yet? I think that’s the clearest indicator of Ms. I had convinced myself I had it too but I think if your symptoms are mainly just sensory it’s unlikely to be MS. Sensory symptoms accompanied with other things such as vision issues, loss of balance, etc may mean it is more likely but still a lot of neuro issues have mimicking symptoms so it’s best not to get too down.

I have my appointment follow up with the new neuro on Friday. I am interested to see if anything was found in the blood work and his thoughts on my electric tests and temperature testing which were all normal.

My symptoms are still all over the place. Transient and day to day can vary, but main things are still visible twitching/muscle contractions, prickling and sometimes also itching. Seems to be no pattern whatsoever I can pin point as to how the body will be from day to day.

Yeah will do. A long process lies ahead no doubt.

No MRI of brain yet. Don't know what will be said in next consultation.

Hope all goes well on Friday.

Thanks!

Last few days have been weird.

- altered sensation in one of my finger tips
- nipping/prickly pain in random spots on my body lasting for only a second or so. Not happening often, but very uncomfortable when it does
- more fasciculations, especially in one spot on my left side forearm. Very off putting and I notice a lot more at rest. Included a video for anyone interested: IMG_1155 on Vimeo

It is still definitely improved from the early months, but absolutely no sign off this going away right now. Will await tomorrow!

Hi all

Had the follow up with my Neuro today.

The electric tests (some of which were for small fibre too such as thermal testing) and blood tests all came back normal.

He mentioned that it's clear I have some sort of post infectious issue and that he doesn't believe my nerves are damaged, but there is a functional abnormality/they are misbehaving at a molecular level, as opposed to being anything structurally wrong.

Think he mentioned something about the brain becoming hypersensitive too and that's why my sensory and motor nerves (fasciculations) are firing off when they shouldn't.

He considers my symptoms on the mild end of the scale (I do agree based on some of the stories I have read on here) and does believe it will eventually go back to normal, although couldn't guarantee that.

He said what I have is on the same pathway as GBS, although not quite the same as I didn't have any paralysis nor needed a ventilator to breathe.

I mentioned IvIG and his thoughts were that it was a little too 'heavy duty' for what I am experiencing at the moment, and it would be best to try a phased approach with first Gaba and then Pregaba before it could/should be considered. He mentioned there's patients he has using this but they have extreme small fibre neuropathy.

He said a skin biopsy wouldn't change the course of treatment so he wouldn't advise that for now, and he also mentioned that generally small fibre damage symptoms are more consistent and include stabbing/burning which I don't have, and that my symptoms are very transient. He did acknowledge though some of what I have described is small fibre.

So, I am going to try Gaba for a few months and report back to him and see where we go from there.

He gave me a lot of his time and answered all the questions I had, so I am feeling more positive that this will eventually go!

Please keep us updated
 

Hi LeedsLad,

I have somewhat a similar story to yours. My issues also started a couple of months after a viral infection.

Sensory changes in both feet, and in legs. Twitching in legs and all-over. Some stiffness in calves. Done a bunch of tests including MRI, Spinal tap, nerve conduction and nothing is found except the twitches that was noticed on the EMG.

**

Br John

Hi there

Hopefully it's a similar prognosis to what mine is then. I do find month-by-month, the symptoms get less and less and especially the last week for me I have found have been a lot of good days. I still get the odd prickly feeling/sensations/twitching, but it's much reduced. I've said that now, so I am sure next week will be horrible :D

This is all without Gabapentin too.

It's pretty much approx 7-months since this all started and my neuro did say it could take some time to fully resolve/peter out and did mention things like post viral fatigue which can sometimes take a long time to get over, if at all.

When the report from our last session is available, happy to post it up in here.

Another thing I forgot to add:

I was trying to show off my new found knowledge on all things nerve-related to the Dr and asked him whether peripheral nerves can regenerate (knowing they can lol) and he said 'slowly' but in your case, I don't believe there is any nerve damage. It is more a functional issue as opposed to a structural issue.

Does anyone know if there have been similar prognosis' on here for people as most threads I tend to read are all around actual nerve damage as opposed to what this seems to be?

The antibody tests BTW were: voltage gated potassium channel antibodies
(VGKC, LGI1 nad CASPR2).

Thank you for sharing your story! I feel the same way like nobody will listen after the first few times. My family is already tired of hearing about my neuropathy i understand completely. I'm having so much anxiety about it and its affecting my life so much.

Hey, to be honest I was at that stage and the initial 2-3 months I feel like were some of the worst of my life. From thinking whether I could live a good life like this to what my future would look like, etc. It was really dark.

It does get better though and mediums like this really help. I'd encourage you to read some of the positive stories on here as it really helped me.

As promised, Neuro letter follow up:

Further to my letter of 5th August, I had a telephone and Zoom consultation with Mr [BEEP] –
he presents with symptoms which came on after a chest infection. This seemed to involve
the sural nerve territory but also the small fibres.
1. Detailed neurophysiological studies looking for abnormalities of large fibres but also
small fibre by Professor Martin Koltzenburg were normal.
2. Blood tests that were done which were normal or negative included LGI1 and
CASPR2 antibodies as he complained of fasciculations, although he has no cramp.
The calcium was normal, phosphate a little reduced at 0.86, magnesium normal,
thyroid function normal, vitamin D levels normal.
The symptoms he complains of are that of intermittent itchiness, tingling sensation, hot and
cold patches which are intermittent and can occur all over his body. He also has twitching
in the arms, forearms, eyelids and knees.
The working diagnosis here is that of a post-infectious neuropathic syndrome which seems
to affect small fibres and to a lesser extent large fibres. These are functional abnormalities as
structurally the nerves are normal, neurophysiologically.
My impression is this is a monophasic type illness and should resolve with time.
At the present time I see no indication for a skin biopsy.
We discussed treatment options and I certainly do not think he warrants treatment with
intravenous immunoglobulin or corticosteroids.
However, he is bothered by the symptoms and therefore I would recommend a trial of
Gabapentin, starting at 100mg in the evening for 3 days, then going up to 100mg BD for 3
days and then 100mg three times a day. The dose can be gradually titrated up to 600mg
three times a day. I have discussed the side effects of tiredness and perhaps weight gain.
On the whole, however, this drug is well tolerated.
If that fails, he could consider trying Pregabalin starting at 25mg at night, increasing after 3
days to 25mg BD, then 25mg in the morning 50mg in the evening for 3 days, then 50mg BD,
gradually titrating the dose up to 300mg BD.
I would therefore be grateful if you would give him a trial of these symptomatic treatments.
He will get in touch with me if he feels he requires a further appointment or any further
advice, I shall be happy to review him.
Kind regards and best wishe

Your story seems to be very similar to mine. I got the FLU (strand B) in January of this year. 2 weeks later I got sick with some 24 hour gastro bug that had me throwing up all day. Everyone in the household got it including my wife and son. almost exactly 2 weeks after that is when my symptoms started. The first week or two it was just my feet. They would burn and tingle off and on. From there it went to my legs to eventually my entire body. I get pins and needles sensations, burning, itching, poking, etc all over my body along with many of my symptoms you described. The first few months it waxed and waned day to day, week to week. Some days it would be a 1/10 and I could hardly tell it was there and others it would be a 6/10 and bud the crap out of me.

Then after about 4 months is basically went away for 2 months. During that time I almost forgot about it all and almost every day was a 0.5-1/10. Then, out of nowhere, it returned back to where it was originally (maybe a little less intense) and for the last month it's been the same off and on waxing and waning. My nuro also suggests it's some type of post viral issue that will hopefully clear up on its own.

I've had a brain MRI, normal bloodwork like CBC, Liver, CRP, etc plus other ones to look for autoimmune disorders and everything has come back normal. The whole thing just messes with my anxiety because of the unknown.

Hi mate,

Yeah sounds identical!

Days/weeks of normality, then spikes of annoyance! It is demoralising to be honest. I think I've already mentioned, the amount of times I thought this was on its way out only to come back is now at least 10-15 times. And each time it does regress and then come back, I repeat the cycle of anxiety, googling, etc. and it's just a vicious circle.

The last few days have been annoying. Tingling and TICKLING of all things in my mouth/face/legs/arms. Twitching seems to have stopped.

I started Gabapentin a few days ago but only taken 300MG so far so hoping they might help, but nothing as yet. The supplements haven't done anything yet either, but that's only been about 3 weeks.

The original neuro I saw thought it was post viral too and said he expected it to clear up in a matter of weeks, but nearly 8 months down the line here we are :eek:

I have exactly the same symptoms as you, like literally everything. Have it for 2 years now, for me it started after knee surgery. I also have the exact same diagnosis with the functional problems rather than structural. The only difference my doctor says is that it won't get much better but won't get worse. It's more irritating than painful, but you get used to it.

Good day from other end of Hell.

Symptoms you are describing is 90% me + i have bunch of other horrible stuff.

I developed severe pain, tingling, twitching,numbness sensation of warmth in the 4th month after infection, most likely COVID. The COVID long haulers groups are full of weird neuro symptoms.

Anyhow I seem to be worse than others . I am in the 7th month of this Hell. So far done lots of regular blood work - low on neutrophils ,
head MRI - waiting on results
Nerve conduction study - all good
Some sonography- all good
Reumo specialist- all good
Will push for lumbar punction

In meantime I have severe fatigue, heart palpations, post excertion Shortness of Breath, Yea, "all good''

The saddest part is I can do nothing to get my energy up- i can not excersise.
And I CAN NOT DRINK COFFEE. This is the absolute worst the few times I drink strong enough coffee, i feel alive, I have hope and energy to do stuff. Only to get hit with unbelivable neuro pain in my legs and arms. In fact the pain in legs started after strong coffee. Also the SOB is very sensitive to cofee intake.

I manage the pain by popping Gabapentin 300mg like candy.

To be honest , If I dont see any improvements insoming months, I dont see how I can live like this. I actually can not do any job. I am worthless human being.

P.S. Got here by searching neuropathy+coffee

Good morning prehisto,

Sorry to hear of your terrible experience. You have it bad. You really have suffered over the last seven months and I hope you find some answers and a resolution of your health problems.

Non tolerance to coffee? or Caffeine? That's awful. Can you drink green tea? Can you ingest caffeine through tablets?

You mention blood work. How are your vitamin levels? B12? B1? Vitamin D?

This is an excellent resource below....

Chronic Fatigue Syndrome and Fibromyalgia

You are not a worthless human being, you are, temporarily, ill. Who you are and what you are experiencing are separate entities. Stay strong.

Hello! Thanks for the support.

I can drink tea, it seems that there is somekind of threshold of caffeine which makes me feel good- alert but in the same time makes these symptoms incredibly worse.

D vitamin was very low but i got it back up. Did not test for b12 but tried to supplement it in large doses. Noticed that it helps a little with fatigue but nothing else.

Yes, have been reading up on CFS but nothing that usefull. Currently i just want to get diagnosed with neuropathy to get some treatment.

Hey Prehisto,

How are you?

Have you thought about starting your own thread with a little more background to generate more support from this site?

My thoughts are you have some kind of autoimmune disorder somewhere on the spectrum and that a specific diagnosis is not always possible and that the self help measures you can initiate will be the same anyway. There's plenty of information here. Go for it.

Take care,

Atty

My 8 month anniversary of this today :(

Hi LeedsLad84,

I am sorry this is not a good anniversary. I have been following your post with keen interest, as my situation is very similar to yours. I keep hoping you and others will post the great news of healing, to give me hope. I still can't believe how quickly these full body symptoms of mine came on. Only thing we can do is try to hang in there.

You guys in the UK are lucky you have all of these resources. I'm a student and not working and I can't get insurance. Insurance in the states is insanely expensive. I had to pay $450 for my EMG that showed nothing and I still have symptoms from the EMG itself. I don't have an actual PCP just a friend of mine but i can't get any testing done because i would have to pay for it myself out of my life savings! This is the system we have in America :eek: