Originally Posted by Dr. Smith

Thought I'd add my 2¢ to this thread, FWIW. I'm getting better, little by little. It's a journey, with hills & valleys, hazards, roadblocks, detours, etc. Hope & Heartbreak.

At my worst, about a year & a half ago, I had all the classic symptoms: numbness, pins & needles, cramps, electric shocks, needle jabs, burning pain, hypersensitivity. Numbness extended halfway up to my knees. Moderate peripheral edema extending halfway to knees.

About that time I began my regimen of methyl B12, & RLA. Tried some others that didn't seem to have any effect, so stopped those, and tried others. Still trying/rotating supplements. Also on High Protein/Low Carb diet - little/no sugar - sugar exacerbates symptoms.

IMO, from what I can tell, RLA, B12, & B5 have been most beneficial to me. Burning pain has been pretty much gone since beginning RLA w/ some tolerable flares. Have a prescription for gabapentin, but have not taken/needed any since beginning RLA. Numbness, pins & needles, cramps, electric shocks, needle jabs all greatly improved. Remaining symptoms now confined to front half of feet. Still have some hypersensitivity in feet, some cramps, occasional "rudeness" of the feet. Still have moderate peripheral edema extending halfway to knees. Massaging helps both edema and PN.

I feel I have pretty much attained my initial goal of arresting/stopping progression, and am now looking into pursuing healing/neurogenesis.

Doc

Originally Posted by karsten

As you started healing did you experience periods where it seemed that it was maybe getting worse instead of better?

Originally Posted by Nervous

July 2012 will be the second anniversary of my diagnosis. My PN has not gotten better yet, but I am hopeful. So far, the only relief that I get is in winter. When the temperatures are cooler, my symptoms are less pronounced. However, my symptoms in summer seem to be getting a little worse each year. Maybe it is because summers are getting hotter each year. I do not know. Also, I find it more and more difficult to walk for very long because of the pain and dysfunction (feels like I am flatfooted) that walking brings on.

But how can I complain when there are some among us who are completely debilitated by their illness, and I am not there yet.

Originally Posted by Dr. Smith

I feel I have pretty much attained my initial goal of arresting/stopping progression, and am now looking into pursuing healing/neurogenesis.

Originally Posted by Nervous

Things may get better for me. Or they may stay the same. But I am past the panic and fear over the fact that they might get worse. My affairs are in order, so I can take what comes, one step at a time.

Originally Posted by Nervous

I have a list of symptoms and of supplements. I'll have to get back to you on all that. But I appreciate your concern.

Things may get better for me. Or they may stay the same. But I am past the panic and fear over the fact that they might get worse. My affairs are in order, so I can take what comes, one step at a time.

This forum, particularly mrsD, have been a great help. I am easily discouraged by doctors — who, as everyone here knows, are inadequate — but NeuroTalk has been a substantive help and I am grateful.

Cheers.

Originally Posted by Wing42

in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.

Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory.

OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate.

The program I've followed all these years is on page 3 of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months.

A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain.