Oi! You passed 3000 without a beep.

That is simply not done! You get 500 days deducted!:mad::mad:

Seriously though, great stuff man. I totally by accident (I swear, what are the odds?) saw a certain before/after pic today, bloody hell...
CONGRATS ICEHOUSE!!!

:grouphug::grouphug::grouphug::grouphug:

It sounded like the nerves showed signs of reacting to the tests in one area more so than the first time, and in the other there was less reaction. So one area improved and the other regressed. That's basically what I had understood.

Which could even be within the margin of measuring tolerances, if the changes weren't really big. (these tests are really really finicky, talking really tiny voltages/resistances/time delays etc.) I mean, have your blood tested by 5 labs from the same sample... different results.



They'll get there. May take a few more years, but with stem cell technology... it's just a specific type of cells that need to be rebuilt along the path of (and around) the nerves.

Hmmm, it’s the 3rd... Icehouse?

Everything OK?

Oh yeah!

3015

I’m in the Bahamas on my Honeymoon! 😁

YOU LEFT ME FOR HER? :mad::mad::mad:




Well, that's a double congrats I would say! Way to go. ;)

This thread has been very informative so want to thank everyone for their input and perspectives.

So my neurologist basically came back with -

- the EMG/NCV were completely normal so large fiber nerves are intact

- i asked about a skin biopsy to test for SFN, and he said he did not think it would be worth going through that right now. His reasoning was that the physical examination (touch, pain, temp, vibration, etc) tests all were normal so unlikely there is any significant SFN neuropathy.

- we discussed alcohol as a potential cause of my symptoms and he feels it is less likely since my symptoms are not totally length dependent. I certainly have symptoms in my legs and arms, but my feet are mostly fine, I probably have more tingling in my hands than feet. And there was never a progression from my toes/feet up my legs, it all really hit almost at once, and i also have tingling on my back, stomach, forehead, etc.

So he basically just said to monitor things, don't over due the alcohol, and if symptoms progress to reach out and I could come back in and maybe do a skin biopsy, or additional testing.

So I guess that is all I can do for now. Kind of frustrating, but it is what it is I guess.

I had missed the “legs but not feet”, but yeah, that is a big sign it’s not your typical PN, your neuro is completely right.

As is his advice. It’s not “nothing”, there is clearly something going on, but not what we typically discuss in this section. So yeah, stay alert, healthy diet, easy on the alcohol & sugar (in all its forms) and try to keep track/find connections, as something makes me wonder: allergy? My wife has similar symptoms, not as bad, but puzzling, and it is allergy/stress related. She drinks as a “normie” but we know it’s not related to that.

Good luck & keep us informed!

Thanks Wide-O - I can't say it is totally not in my feet, I guess they tingle a bit now and again, nothing in toes at all though, and sometimes in the morning my feet and lower legs feel weird, not numb, but not normal. Would say my calf area is where it started with the tingling and some muscle twitching. But also in my thigh/hamstring area.

I guess one question I have, is in the length dependent symptoms, do your your feet continue to get worse as the condition progresses up your leg? He seemed to imply that I would have some sort of sensory loss, pain, more severe tingling in my feet if I was experiencing symptoms further up my leg.

Interesting you brought up the stress stuff, my father recently passed away and that has been rough, and I just had shingles too I think from just being worn down.

Icehouse, that is awesome, especially your honeymoon :D.