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.

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:

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!