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.

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.

--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.

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)

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

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.

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