Thanks dahlek for the post. You have a good point about a 'blown-up flare'. I was thinking about that...

When I had the 'full blown-up flares' (June and September 2009), I had severe pain starting in MY UPPER ARM bicep (weird). Not both arms but one arm, right arm in June, left arm in September. On both occasions, it progressed to tingling and numbness in my hand and in June to my mouth, tongue and head (felt like lidocaine). I had GP (hospitalized), Pots, severe weakness, and all the autonomic dysfunction. The tingling and numbness did improve both times, ending in tingling in my fingers... but, this last flare took a full five months to resolve. Now, I just feel some intermittent weirdness in the forearm and sometimes the fingers. When I am having a bad day, I feel a greater degree of the tingling. This type of sensory disturbance may be common to those with PN... I don't know, but it is fairly new to me. My feet have been 'dead' a long time, but the other numbness, pain and tingling in my arms, face, mouth and head is new this year.

I think that if any sort of neurological testing were done during these 'critical' periods, something may show.

It is may just take more time to become apparent in my chemistry...unfortunately...or fortunately, that I have not had any severe 'flares' since September.

Is this sort of sensory dysfunction common? Do you have this?

Mere

Right now, non-functional...lost lots of muscle tone. Muscle tone is hard to achieve when the foot doesn't work right?
When off? I'd once used my cane to push myself out of my car, Started to move, and couldn't...found that the cane tip was RIGHT IN THE CENTER OF MY FOOT! Duh? Didn't feel a thing in the foot at the time, could have broken something, but, luckily didn't? Grateful for THAT.
It comes and goes in 'waves' sort of.. You feel weakness 'coming on' then? You're able to slog thru and overcome it or collapse. I try hard not to do the latter.
Just be patient, do yer homework and ask 'stupid' questions as to where YOU think this mite be coming from or heading? Never ever say: got it from the 'web'! Just if you must? Say I saw a paper from NINDS or the like [any really respectable publication?] and it got me curious? Here's the first page...don't print out the whole thing...but I only give out a page if the doc is receptive. Many are NOT! If not, it can work against you. Docs and their biases...don't you know?
Keep at it. Hope always! - j

Thanks for the advise. I know that docs can be very egotistic and if they think that you know too much, they may label you as a hypochondriac... I keep judicious notes about what has happened each time this occurs as a collapse and what i feel on a day-to-day basis. They seem to like that.

Your difficulties sound more serious than mine... I am so sorry to hear what happened with your cane. I have found that my muscle tone has been getting worse - in my case, I think it's from not exercising enough - being more sedentary.

Thanks for the coaching... It is very helpful...

Mere