My name is Bob, and I started suffering from PE about 2 months ago. It started as a loss of sensation/tingling in my legs, lower back, and arms - especially the outer part of the arm, but including the hands. Within a week I was using a walker, and then spent 6 days in 2 hospitals - that time included a spinal tap to check my spinal fluids for virus & signs lf menangitis - but no such evidence was found. During the prior 3 months (May-July), I'd made some significant lifestyle changes including stopping drinking, and exercising nearly daily - I was already eating fairly healthy (not alot of processed foods, most food made from scratch here in my kitchen, high use of organic product). I am not diabetic, nor pre-diabetic... in fact the only out of range number during my last physical was that my HDL's should be above 40, and mine was 37. There was no specific B12 indicator.

When I was first in the hospital, I was told these kinds of things can take days/weeks to recover from. Since then I've learned a more ugly truth - some people never recover. Some get a partial recovery. Some of you folks have been dealing with this for 10+ years. When doctors dont know for sure, they seem to generally default to the "b12" deficiency theory, because they have no other answer.

Thank you whoever started this site, I finally feel like I have some folks I can talk to who understand and may have some answers.

Q1: are there any official published numbers on % of PE patients who achieve a) a full recovery, b) a partial recovery, and c) do not recover? Ive searched the internet some, and cannot find any solid study numbers - I'd really like to know what my odds are.

Q2: any other suggestions on dealing with this maddening condition appreciated

Currently I'm taking 1000 mcg of B12 and Norwegian gold broad Omega (5 different kinds of omega oil). I have 9 PT, 9 balance and 13 OT exercises + as much treadmill as i can do (up to 1.0 mph at 6 minutes) and I walk without the walker or cruches as often as i can (about 60% of the time). I can do some basic chores (wash dishes, do laundry), but still cannot get up from the floor if I fall. I try to get thru half the exercises every day, and I rotate them.

I've noticed my endurance/energy tends to trail off about mid-afternoon, so evenings I'm mostly using the walker.

Please tell me there is an escape from this hell! I cannot drive safely (my foot sometimes cannot find the brake), I can barely type, and cant walk up and down the halls of work. I'm still on short term disability, but if I remain in this condition for another month, I'll have to switch to long term, which likely means I will lose my job. How difficult/must time does it take to start getting SSI if I am declared disabled? Will they help me move, given that I'm in an expensive house at the moment, and will clearly have to sell/move if I'm reduced to SSI income. What about getting into supplemental medicare programs (insurance) to offset Medicare expenses, given I already have this damn thing. The future seems so bleak...

Thanks for any help, and listening. Peace and joy to you,

/Bob