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Neuropathy Message Board


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Hi:wave: Welcome to the boards.

I do agree you should certainly see a Neurologist.

First let me say acupuncture won't help.
Been there done that many years ago, to the tune of $500 out of pocket.
10 sessions of acupuncture and Chinese Massage.
The acupuncture was painless but the massage was very painful.
After each session I'd go home and sleep soundly for 2 hours.
Very expensive naps.
But it did not help my PN at all.

PN is NOT a disease.
It is group of symptoms that can result from many diff sources.
The trick is to find the source (cause).
You need to search for the cause, cuz that is the disease you need to fight to get rid of the PN.

Idiopathic means unknown cause.
That's me.

Axonal means that they have figured out that the internal layer of my nerves is what is damaged.. (NOT the outer layer).

Periphial means the weird sensations are felt in your limbs.

Neuropathy is term used to referr to any "incorrect sensations" being signaled by your nerves. There are really many many diff sensations possible and they are generally hard to describe to anyone who doesn't know what we are talking about.

My family does not understand it all.
I've given up trying to explain it.
I did not live near them when it began so they have never seen me with it at its worst.
I am near them now, but they are never gonna understand the PN.
I do live alone.

From what I've read I think people with outer layer damage suffer much more than I do.

I have no pinched or entrapped nerves. Believe me the diff Dr's have X-rayed, MRI, and CT scanned every inch of my spine multiple times so we are positive nothing in my skeleton is causeing this.

Diabetics often get PN,
BE SURE TO TELL THE NEURO YOU HAVE diabetes

Here is a URL that has lots of links for all kinds of info concerning Diabetics and Neuropathy.
Just copy/paste the link inside the URL symbols to your adress bar to GO there and read info.

[url]http://search.nlm.nih.gov/medlineplus/query?FUNCTION=search&PARAMETER=Neuropathy&DISAMBIGUATION=true&SERVER1=server1&SERVER2=server2&START=0&END=25&MAX=500&ASPECT=2[/url]


I am not a diabetic
All the various blood tests have not found any reason for my PN.
Also some vitamin or mineral or chemical imbalance can also cause it.
Disease can cause it, but I have no such disease.

There are many diff types of PN and actually more than 100 causes.

Many people on this board have much worse PN problems than I do.

Mine started in the end of 93 beginning of 94 (hard to remember the exact year maybe it was 92 -93 I don't remember cuz it was too long ago).
It began in both feet, legs and rear end.
Took 4 months of Family Dr, then a Back Clinic, and finally Neuro to get a Dx.
BY then the left leg and foot were actually better, not well but much much better.
But the right foot and leg were in horrid shape.
I was given carbamazepherine (I can't remember how to spell that)
In a few weeks it began to control my pain.

Still had no ability to balance in my right foot and leg, of course, but hey major pain relief is a wonderful thing.

Try not to limp.. I KNOW that's hard, but the limp pulled my pelvic bone out of whack and caused more pain in my lower back and hip.
At least a Chiropractor easily put that back in place for me, although he said he could not help my PN.

Of course that was all so many years ago..
I've since moved to another state and gotten a new Neuro.
He did new more modern tests but came up with the same Dx
He prescribed the same med the other one did.

In about yr 2000 I was haveing a terrible time staying awake.
The neuro had me do a sleep study and did not find sleep apenea.
This told him the only thing making me so sleepy was the meds.
So he changed the med to Neurontin.

I take VERY LITTLE.
200 mg in the AM
100 4 hrs later
100 4 hrs after that
and 200 before bed.

Yes, the foot and leg tells me when the 4 hours up for sure.
No doubt about the PN still being very much alive.
But I found if I took more I became a much much more nervous driver..
so I keep the meds very low in the daytime.

Pretty much after changeing meds my dead toes sudenly began to feel the floor under them again.
I could wiggly them up and down at will.
THAT was a fantastic improvement for me.
The feeling of "The floor" is imperfect..
(sort of like the floor is there under tingly marshmellows.. How's that for a description)
But the point is I CAN feel the floor.

So years pass..
In 2004 the PN broke though and effected my left arm.
OH that was such a lousy experience.
I ran the entire gauntlet of vascular & heart testing as well as my neck and shoulder spine areas. That is becasue when your left arm goes nuts you have to be sure it is not a sign of a vascular or heart problem you know.

Fast foreward to more current situations..

The Neurontin seems to be controling most of the actual pain in evey thing again now.
The right leg and foot are always a bit creepy crawly and tingly with some burning even with the pills. I've grown used to it. Not happy about it, but used to functioning in spite of it.
There is a feeling of bugs crawling on the left foot,leg, hand and arm once in while.
But the REALLY terrible electric internal burning is not being felt when I have the pills.
So the pills are working pretty good in that department for me.

There HAS been improvement over the years.
I shudder when I think of those first few months.. that was so horrid.
The first few years were fairly lousy all the way around.

THIS year I'm seeing a Chiropractor on a regular basis since May (for osteoarthritis and osteoporosis, not my PN. I had some joint problems that have taken my mind off the PN. The Chiro is really helping my spine problems but in my case the PN is supposedly not part of that)

AND I have started taking once a month B-12 shots in hopes opf helping the PN heal.
I've had 4 shots so far.

I don't know which one is helping my PN, but something is.

I can move actually move my pinky toe sideways away from the other toe.
Takes effort but I can do it and that has not been possible for the past 12 years.
I am aquireing more feeling in the bottom of my foot as to exactly what the foot is touching rather than just the
buring tingly feeling. When I force the toe to move I can feel the internal muscle functioning all the way up through my heel.

This is progress!

THERE IS HOPE.





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