Are there any success stories
 

I mentioned in my first post that I have sensory pn that began in my left big toe and then right and has slowly moved up to my lower calves within the last 8 years. I am now beginning to experience sensitivity loss in my finger tips. I have never experienced pain other than tingling and all emg and nerve conduction studies have showed no motor nerve involvement. My feet are virtually dead to the touch, but my walking is pretty good. I have been to Jack Miller Center for PN, UTexas med. school, two dallas neuro. and Ira Chang, M.D ,a neurologist in the Denver area. (By far, the most thorough of them all)

I have had pretty much all of the blood tests, a lumbar puncture, urinalysis, urodynamic testing, MRI, CT scan, evoked response studies, CTM genetic testing, myelogram, IvIg, and, whew, I know there must be something else. MRI revealed a bone spur at C6 protruding into spinal fluid, but evoked response studies revealed no conduction problems. Protein elevated slightly in lumbar puncture (59%). IvIg did not help. Serum protein electrophoresis showed a polyclonal increase in immunoglobulins consistent with active, chronic inflammation.

I have lead in me from a gunshot wound 45 years ago, but heavy metal testing was negative.

I have been on gabapinten for six years and was recently started on a regiment of prednisone 10 mg every other day. My diagnoses have ranged from idiopathic axonal sensory pn to CIDP.

I, like so many of you, don't know what the heck I really have and don't hold out a lot of hope of finding out. But, just so I can keep plugging away at it, are there any success stories out there? Also, are there any new trails that I should pursue. I would appreciate any suggestions and would sure enjoy any stories with happy endings. Jim

I would find another doctor to evaluate the lead.
Perhaps one that is holistic (who can do chelation), and further
testing.

http://www.find-health-articles.com/...gun-injury.htm

This article explains lead's actions in the body:
http://emedicine.medscape.com/article/410113-overview

Because lead goes into bone, it may not show up as high levels in the serum at this late date. But because bone turns over every 2 yrs or so, it would be released constantly then reabsorbed.
The only thing going against the lead hypothesis would be your lack of other symptoms. But because lead is such a huge poison, I'd have a specialist evaluate you. There are environmental physicians, and that may be a good place to start, or a holistic MD.
http://www.aaemonline.org/

Medicine is an imperfect science, and labs make mistakes, and your retention of lead logically seems important at least to me.

There is a sticky thread at the top of the page here, "Neuropathy does improve"... here is the link:
http://neurotalk.psychcentral.com/thread43699.html

I would get another opinion, if it were I.

There is always hope. My neuropathy has improved, I doubt it will ever be gone, and I will always have to take B12, yet it is better.

My feet have never been totally numb like yours. At one time, they were very painful. At that time, I didn't realize I had neuropathy, and with no insurance, I didn't seek a doctor's help.

My neutropathy started in my hands, or appeared to start there with carpal tunnel. For years previous to that, I had hip pain, upper arm pain...like arthritis, I thought. My issues began because of a gluten intolerance, which was undiagnosed for years. My issues all started when I was pregnant with my 2nd child, who will be 33 next month, and my gluten problem was finally figured out 9 yrs ago...which is far longer than the normal 11 yrs diagnosis time. The gluten was doing damage to my nerves for a very long time.

Five yrs ago, I started on B12, fist 1000mcg, then 3000mcg, and for over 1 1/2 yrs, I have been taking 5000mcg. Very rare for my feet to have pain...knock on wood, the buzzing has stopped, I haven't had any electric shocks for some time now, and I can sew again. I do still have balance issues, and when I take long walks, I sometimes have drop foot...yet as a rule, things are much better for me now.

Along with the B12, I have been exercising daily since January. I do get flare ups in my shoulders from some exercises, but I do not give in. In the long run, I think the exercise will be as valuable to me as the B12.

Oh, and yes, I have sensory neuropathy with some axonal involvement, along with gluten ataxia.

There is always hope.

I am so glad that you are doing better Deb. I hope you continue to improve and its great that you can go for long walks again. Wait till beach season! ha.

Thanks Echoes. I do love the beach, you know that, but walking in the sand is so difficult. Getting to the water I can handle, it's mostly downhill, getting back to the car, uphill, is another issue.

I have to edit this statement. Gluten was causing my B12 deficiency, which in turn damaged my nerves. Of course, gluten doesn't just mess with B12, it causes many vitamin and mineral deficiencies..I am also dealing with iron and Vit D issues.

Anyone with neuropathy, should check into gluten too. They are finding gluten to be a problem with more and more people every day.

Mine was caused by Prediabetes & I was low in B12, it started in my feet then went up my legs, some large nerve involvement going by an emg but mostly bothered by the burning & electric like jabs and numbness.
For the last 2 years I have been symptom free, everything is back to normal, it took 5 years to get to this stage though.

I do hope they can find the culprit causing your neuropathy.

Was reviewing a journal from 2007 the year I cut off a finger while working in my shop and today I can say I'm during better after having PN over 5 years. This I believe is due to using this forum and getting a better handle on this condition. I have a better understanding of PN and I believe the body has in some way accepted the pain in a funny sort of way. I have tried many meds and supplements and can cope better after going on Methadone along with the Lyrica. Staying busy with some projects I'm able to handle keeps my mind occupied and my butt off the couch. I sleep better now than I use to and I have accepted the fact that I will go to the grave with this crap, but to me death is a new beginning so I try to enjoy the day.
Lanny

Five years!? Holy moley! But, if that's what it takes, I'M IN!! and ON MY WAY!

Nope. If anything, it's gotten worse.

Responding to your old message on PN
 

Hi Brian,

My PN sounds similar to your symptoms. I have Idiopathic PN, but have been told I'm prediabetic. I'm 53. My PN has spread the last 10 years from a toe on my left foot to both feet and up my legs into my calves. My symptoms sound similar to what you described. What did you do to get your PN to go away? Is it still gone? I have tried supplements, different diets, creams and oils, with the PN continuing to spread over time. I have so far avoided taking pain meds, or prescribed RX. Sometimes the pain levels get really unbearable and I feel pretty desperate. I want to get over this and would love to know what worked for you if you can email me.

Thanks,

J Stewart