My neuropathy started in my feet more than 15 years ago, but was mis-diagnosed by my HMO GP for years. He thought it was either being on my feet at work, then 'all in your head', then sent me to a podiatrist who suggested orthopedic shoes and inserts.
It was dx'd in 1999 when I was hospitalized for pancreatitis.
Since then, my current PCP, & my neuro & I, have worked together to decrease progression and aleviate pain- thru meds and supplements. My EMG & NCV in July, showed little to no significant difference in tests done 4 yrs ago.
I think that supplimenting B12 has been the most effective for me.

I didn't even know my feet were numb.

Six years later, it is in my arms and autonomic nervous system.

That said, I had Lyme and have Sjogrens, oh and got whacked by a truck head on at 55mph.

It is hard to compare from one person to the next.

IVIG helped my numbness and 'falling asleep sensation' tremendously.

One year and 10 months in I have had little progression - it all came on in an onslaught, pins, needles, burning, weakness etc in hands and feet and now it is pretty much the same with occasional flare ups of different symptoms and occasional periods where it feels slightly better - but nothing substantially worse. Dr says it will get worse but doesn't know when. IVIG may or may not be helping, hard to tell. It's idiopathic. Basically I think there is really no way to tell. All you can do is the do the best you can to take care of yourself - lower your stress, get rest, try to eat healthy, try different meds/treatments etc - and cross your fingers!


QUOTE=cyclelops;414173]I didn't even know my feet were numb.

Six years later, it is in my arms and autonomic nervous system.

That said, I had Lyme and have Sjogrens, oh and got whacked by a truck head on at 55mph.

It is hard to compare from one person to the next.

IVIG helped my numbness and 'falling asleep sensation' tremendously.[/QUOTE]

I've had neuropathy for three years. it began on the top of my legs and reproductive area and it spread in about three months to my calves and feet. I was given prednisone and then IVIG. It hasnˇ't progressed eversince.

Objectively speaking it has improved a little. For example, when crossing my legs i could feel that my foot being pulled down, like a super gravity force or feeling of it being heavy. That i don't experience anymore. i also remember i used to describe my pain like a long worm or a snake slithering in my calves. Now i don't experience that very much, and it feels more like little bugs.

I have been taking a lot of supplements, also one recommended by a mexican doctor who discovered an unknown mechanism in the human body.

I guess the combination of meds and supplements has enabled me to heal.

I forgot to say this before, in the beginning, when my neuropathy was diagnosed. I had EMG and NVC and they showed nerve damage, after IVIG and a hyperbaric medicine treatment i took the same tests and they showed no damage. I'm not sure which one did the job.

No one can really give you an answer on how fast neuropathy can progress. First there is the issue of what is causing it. If you can treat the cause you may be able to arrest the neuropathy.

I didn't realize I had neuropathy until I was presyncopal due to hypotension and bradycardia, and it was already thru my autonomic system. After skin biopsies, they found I had sensory neuropathy as well. I have it in my legs to above the knee, and in my hands. A muscle biopsy of the bicep shows neurogenic myopathy which means it is up there too. I was not diagnosed until it was advanced because I didnt have burning feet.

Their thought is autoimmune, and I get IVIG, which stops the numbness and falling asleep feeling. I have had Lyme in the past. Post lyme issues are treated for the most part, like fibromyalgia or autoimmune disease. Lyme is known to cause PN and dysautonmia. I would not wish dysautonmia on my worst enemy. I also carry a seronegative Sjogren's diagnosis. Doc at Hopkins told me half of Sjogren's pts. are seronegative.

PN is rather unpredictable. Take the best care of yourself that you can and search for a cause.

Good luck to you.

Were you diagnosed with anything or was has it been "idiopathic" the whole time?

You're supplementing with B12... were your B12 levels low?

Thanks,

Ed

I have alcoholic neuropathy (as one of the causes)
Mine is axonal sensory polyneuropathy
(of length dependent nature)

My B12 was borderline at about 550-600 and now
it is in the 1200-1500 range. The original B12 range
was probably a cause of the alcohol.
But my Sx were prior to the heavy alcohol.
But I was a musician and was playing in bars for many years of my adult life. My doc was mis-diagnosing my Sx for at least 5 years & I was self medicating with booze, before my Sx were finally Dx'd....... when I was hospitalized for pancreatitis in 1999. A change in docs and getting a good neuro specialist in PN, as well as these boards helped me find my way to living with PN.
Acceptance then taking action, were my biggest hurdles. Once past these, I was on my way to finding the proper treatment, meds, and supplements.

went from mild nerve damage (I woke up one morning with a completley numbly hand and foot but not much attention was paid to symtoms) and being able to up walk 3 flights to my apartment to a wheeldhair in little over a year - and tests confirmed completely senosry loss... I have full body pn - presumed genetic - (no other explanation has been found and high dose ivig didnt help - had every test in the books and consistenent is the presentation of the damage - both large and small fiber loss, and severe nerve root loss) also autonomic nueropathy - leaving me unable to have any food - just a few liquid supplements (9 years now) - and heart complications that continue to worsen but are controlled for now with meds....... (all my bloodwork was fine during all of this)

We are all different - my docs at first thought no big deal - just a post viral infection.... so it sure does pay do do our own reserach!

My first visit to my GP was because both of my feet and legs went completely numb below the knees and my arms and hands had limited sensation below the elbows. I thought that I may have pinched nerves because it came on within 1 week. Years of testing for MS, ALS, CIDP, and brain tumors were negative, so then it was "in my head" despite frequent falls, foot drop and extensive damages shown on EMG. I did not get a Lymes diagnosis until almost 4 years after the onset of symptoms and have had it now for 11 years. I have relapses that further destroy my nervous system, no cure is known and so far no treatment has been helpful. My suggestion to is pursue a diagnosis and get the labs and studies to back up your symptoms because if the MD doesn't know what it is, they may blow you off until it is too late to reverse the damage (like in my case). Good Luck!

My neurologist sugested that this can be a type of light GBS or toxic - if it progress very quickly - and then stop and start to improve. You need time. in my case it was like this - but now, 3 years after onset I start to feel improvment. no pain, no burning, and so.
So, eat well, take vitamines and think possitively.