I posted about phonotonic and etoims but no one has replied yet, so let me ask it another way- for neuropathy - severe- wheelchair
what else besides meds? have tried accupunture, matrix. papimi,
am an invalid.
helpsteff

((((((steff)))))))

I don't recognize many of the words in your post. So what I will tell you is that after several car accidents many years ago I tried Feldenkraiz on the suggestion of a friend... it's a soft tissue therapy, and it got rid of my limp.

That was before I knew I had a B12 deficiency. I also went to a body work man who was/is highly respected in our area, and that was sooooo painful. I think it was so painful because he pushed on pressure points that were extremely painful because of low B12, only I didn't know that then.


MY PN was never so bad I had to be in a wheelchair.

With the tetanus I had I couldn't have been in a wheelchair because I wasn't strong enough to have moved it. Tetanus takes away nearly all of ones strength.


But, I do know that after I had a B12 shot a day for a few months, the PN in my thigh that had been so bad I had to sleep on an air mattress, and even at that was repeatedly woken by pain -- went away.

I get twinges of it now, because there's major stress... but otherwise the constant third degree sunburn feeling and sharp pain is no longer there.

So... if you aren't taking Methylcobalamin, the form of B12 that our bodies use, I would try it if I were you... I'd get the 5mg ones and take at least three a day for a week... maybe longer...

For me to have had a shot a day for three months, (and sometimes two shots a day) was about equal to 6 to 12 of the 5mg lozenges a day...

but that would be really expensive.

If you try the lozenges, be sure to keep some notes, and if you find they help at all, then I would try to get my doctor (if I were you) to give me a prescription for self injections.

the only thing is, that on my thigh where I used to have the horrible PN, it's harder to do shots because just the touch of the needle is painful... but on the other thigh the needle often slips in as if it were going into butter...

(perhaps that means I'm WAY too fat)



((((((((((Steff))))))))))))

The weekends are slow and lots of our regulars are on vacation. Please be patient in this. There will be more people posting soon.

Billye

thank you silver lady-
this is all i do all day is read and look at posts now-so i get wired.
i was teaching until june IN AGONY AND SEVERE KNIFE PAIN and sit here still with it.
i will wait.
thanks
steff

Steff:

My husband was diagnosed with Idiopathic neuropathy 15 years ago. 5 years ago (way before he was diagnosed with Chronic Inflammatory Demylinating Polyneuropathy, and was put on IVIG), well, 5 years ago, my husband was an overweight out of shape, arthritic man, with such severe neuropathy, he was on a fentanyl pain patch and took vicodin for breakthrough pain. He never exercised. He never walked anywhere. The pain just did him in.

They tried neurontin, (got deathly sick), they tried Elavil, made him itch like crazy, the only thing that worked was the fentanyl, but you don't go to the bathroom when you are on this because it's like morphine with the same side effects. And they had to keep increasing the dosage and he was once on 125 of a patch (changed every two days). So that should tell you the pain this guy was in. And he's not a diabetic by the way.

So one day, years ago, I was on these boards and I came across information about a type of medical practictioner called a chiropractic/neurologist.

Never heard of that 5 years ago. At the time there were only 600 practicing in the whole world. I did the research and I found one in NYC which is near where we live. His name is Scott Theirl and I made an appointment.

A chiropractic/neurologist is a chiropractor who takes 3 years of neurology. He is knowledgeable about the whole body and makes adjustments and he treats THE WHOLE BODY. No pills, no drugs. He does believe in supplements.

So we made the appointment and the first appointment was 3 hours. He examined Alan (who could barely move at the time, couldn't bend his legs, he was so out of shape, well forget it, he was a mess). We really didn't know if this guy could help Alan but we gave it a try.j

So Alan walked in at 267, completely out of shape and on fentanyl and vicodin.

Well, in just a matter of months, my husband was off the fentanyl, doing different variations of exercises, and was a new person. We went to a nutritionist. Dr. Theirl uses a G5 machine and (according to Alan), it's a piece of heaven. When you get up off the table, you can go and fight bulls.

Alan continues to go off and on now to Dr. Theirl. At first it was 3 times a week. He tested his brain with this machine. He did adjustments, well whatever he did, he saved Alan's life. That's all I can say.

We had tried acupuncture, meds. But after going to Dr. Theirl, Alan's life changed.

He was carrying to much weight and he could not move.

Dr. Theirl got him to move. Alan had to de-tox off of the Fentanyl. That took some time. You have to reduce the amount slowly. But Alan couldn't get off the last 25 of the Fentanyl. He had to go to the hospital into their rehab program. Guess what happened?

He walked in wearing a 25 patch of the fentanyl and they took his blood. The next morning they woke him up and said "We can't find any drugs in your system, you have to go home". He tried to explain that he came in wearing a patch, what are they talking about??? but they were adamant. Turns out that you need a special kind of blood test or some special test to detect fentanyl. Also, when he was admitted, the person taking the information didn't even know what fentanyl was. Absolutely mind-boggling.

So Alan came home after one night and had to de-tox in our bedroom for a whole week. It was like a bad case of the flu. I just had to leave him alone and he got through it.

He has never taken a pain med since. He is now on IVIG. It doesn't help with the pain, but it helps with his balance.

According to him, as soon as he gets rid of this foot ulcer, he will go back to the gym, work out like crazy and he doesn't feel the PN.

So for my husband, exercise is the key. And Dr. Theirl saved his life, believe me.

Hope this information helps.

Melody