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avi123 wrote:Max Raxgdale you have something else than the ordinary Peripheral Neuropathy (PN).
Diabetic retinopathy, neuropathy, and nephropathy are something else.
The main problem with PN is the loss of balance by effecting the vestibular system, and there is no cure.

Raxgdale? LOL. Even google doesn't have results for that
Ya, I know I have something beyond PN, as my colon is involved. My mom has Charcot-Marie-Tooth in all its glory, and neuropathic deafness and thus not peripheral either, and there's like 40 genes involved, so the manifestations are many.

Sooo... my neurologist just calls it "neuropathy", leaving off the peripheral and no, there's no cure, that I know. Heck, there's NO TREATMENT. Blah. It's ok, there's no pain, walking is getting a little weird, just no more neural velocity tests please! (ZZZAAAPPP! OW!)

squid13 wrote:Metanx is the brand name of a multivitamin manufactured by Pamlab. Each Mentax tablet contains 25 mg of vitamin B-6, 2.8 mg of folic acid and 2 mg of vitamin B-12. Generally, these vitamins work by increasing the blood flow to your nerves. Mentax is a prescription medication, only available under a doctor's supervision.

Gee, Squid13, if that is all there is to the formula, why not go to the local drugstore or WalMart and buy B-6, B12 and and Folic acid? It might be more mg than the Metanx but would that be a bad thing?
Cindy

Thank you for all the information. I've searched on PN before and not found much here.
I had Sensory PN a year before being diagnosed with OSA in 2010 (O2 was 82%). The prickly feeling stayed in my feet for 6 months. Then it moved rapidly up to my hips, and from fingertips to shoulders in a week. This at the same time I was making huge mistakes at work from poor memory function. It felt like my whole body was on fire. Boss cut back my responsibilities. Was scared to death of getting fired. Took ibuprofen every night to get to sleep.
Neurologist performed electrical nerve function tests and found some loss in the right leg. Also some nerve loss and slow response in muscles in right leg. Had trouble with balance in the dark or when walking on floating docks at the marina. Shortly after that began having muscle twitches in arches of both feet. 3 months later muscles were twitching in feet and lower legs.
Began taking 6OO mg of Calcium 2x a day, 99 mg of potassium, and 750mg of Magnesium after a study was released saying HIV patients were found to NOT get PN from taking HIV medication. Or their symptoms of PN were reduced.
Enter the S9 Autoset in April 2010. Six months after I became a hosehead the tingling had retreated to below the knees, and gone from arms. I could feel the "sharpness" of a toothpick when touched from hips down to knees (before CPAP could only feel the pressure of being touched). Began to feel texture of carpet....where before it all felt the same, carpet or tile.
Now the burning and tingling sensations are confined to the ankles and feet. BUT I can feel the sharpness of a toothpick from hips down to just below the ankle. A huge improvement. And can feel the barefoot grittiness of a sidewalk. Stepping on a stone now hurts. No longer need to take Gabapentin and Nortripulin. So happy to be off the Gabapentin... I was stoned for the first 48 hours when began taking it. Dr had me on 300 mg at the start!

Hubby had PN and restless legs. He also has OSA. Got his CPAP in Jan 2009. Now the burning sensations and numbness is just in the tips of his toes. His O2 was only 88%.
Neurologist told him that nerves will regrow at a rate of 1/4 of an inch a year. With that snail's pace wouldn't it be hard to tell if any medication or herbal remedy is working? How long did you take ALA before discovering that it helped?
Wish you all the best... and will try that ALA. Thank you for all this information!

Cindy

Hey Cindy. Thanks for sharing that. Good it's on the retreat !

"wouldn't it be hard to tell if any medication or herbal remedy is working?"

I agree. My neurologist says the damage is permanent and progressive and the only judgement I would be able to make is some sense of non-progression over quite a long period, some numerous months maybe. I'd have to ask myself the question, "Do I think this is less worse than what I would presume I would be otherwise", not knowing what that "otherwise" would have been. Seems iffy. I suppose if there's no harm, it's worth even a placebo effect

Cindy Lou Who wrote:Gee, Squid13, if that is all there is to the formula, why not go to the local drugstore or WalMart and buy B-6, B12 and and Folic acid?

You will find that what you buy in WalMart or your local drug store is in mcg or Micrograms where the Metanx is in MG or miligrams. One milligram is equal to 1,000 micrograms. That's why it is a prescription drug cause each tablet contains 25 mg of vitamin B-6, 2.8 mg of folic acid and 2 mg of vitamin B-12. You can't buy that high of milligrams in over the counter vitamins, people get confused between mcg and MG.

Squid, You were right about the mcg. The "Spring Valley" brand from Walmart is what we have. The B-6 (according to the label) is 100mg, but the B-12 contains 1000mcg. So, I would need to take 2 tablets of this B-12 to equal the 2 MG in the Metanx formula. Perhaps the ratio of each item the the others in the Metanx formula is just as important.
Cindy

MaxDarkside wrote:

avi123 wrote:Max Raxgdale you have something else than the ordinary Peripheral Neuropathy (PN).
Diabetic retinopathy, neuropathy, and nephropathy are something else.
The main problem with PN is the loss of balance by effecting the vestibular system, and there is no cure.

Raxgdale? LOL. Even google doesn't have results for that
Ya, I know I have something beyond PN, as my colon is involved. My mom has Charcot-Marie-Tooth in all its glory, and neuropathic deafness and thus not peripheral either, and there's like 40 genes involved, so the manifestations are many.

Sooo... my neurologist just calls it "neuropathy", leaving off the peripheral and no, there's no cure, that I know. Heck, there's NO TREATMENT. Blah. It's ok, there's no pain, walking is getting a little weird, just no more neural velocity tests please! (ZZZAAAPPP! OW!)

Sorry Max, I meant Rexdale ( http://en.wikipedia.org/wiki/Rexdale ). Or Darksdale. Is it closer?
What is "neural velocity test"? Do you mean " nerve conduction velocity test" ?

When I did it last year, the Neurology Doc said to me: Are you not ashamed to come here and waste my time given your age of 82?

I have yet to tell it to his boss.

My worst test (no pain but embarassement) was this:

Posturography

See it illustrated here (standing inside the booth while the floor drops an inch):

http://american-hearing.org/disorders/v ... r-testing/

avi123 wrote:Sorry Max, I meant Rexdale ( http://en.wikipedia.org/wiki/Rexdale ). Or Darksdale. Is it closer?

I'm still lost on that, but that's OK.

What is "neural velocity test"? Do you mean " nerve conduction velocity test" ?

One in the same.

When I did it last year, the Neurology Doc said to me: Are you not ashamed to come here and waste my time given your age of 82? I have yet to tell it to his boss.

That was rather rude of him.

My worst test (no pain but embarassement) was this: Posturography

Interesting. I never heard of such a thing. I don't have balance issues, so no need. The walking effects I'm starting to feel are principally due to loss of sensation in the feet. I notice some early changes in foot geometry too, probably due to atrophy. My mom has Charcot-Marie-Tooth's significant foot disfigurement, substantial toes pointing outward on both feet. Mine I notice are just starting to do that a little. She has the hammer toes, I don't. My wife saw a new neurologist yesterday and says my wife may have neuropathy too, how odd. She's scheduled for an EMG to see if this coincidence is correct. The neurologist is also putting my wife through a Sleep Study! Not for sleep disorders, interestingly enough, but because of all the neurally related monitoring (EEG, EKG, leg movements, etc.) because my wife has hyperreflexia in the legs (whack a hammer, FIELD GOAL !) Along with that comes a spinal MRI. As background, my wife has autonomic dysfunction and perhaps a cardiomyopathy, symptoms of heart failure, out of control blood pressures, narrowing pulse pressures (the trend on this is NOT good), tachycardia (also increasing steadily over the years in the face of meds to slow her down) and a long list of weird symptoms at the age of 46.

I was surprised to see this thread still going-- Over the holidays I was swept into grandkids and the Apple store. We all survived but my feet are not any better. I can't get those cute little hammertoes into any nice looking shoes. I do have the name of a podiatrist who promises whatever. I will see what he has to say and post here. Maybe we're all down a giant rabbit hole?

Lynda

Bad hammer toes can be surgically corrected. I had a friend that had his fixed.

What procedure did he have to correct the hammertoes? Would he do it again? Getting my knee replaced wasn't much fun. I'd do it again but I would NEVER let "Dr. Gorgeous" or his band of merry docs touch me again. I'll think about the other knee someday in the future maybe.

Lynda

Piglet: How about custom sandals or peep-toe pumps?
If it is merely cosmetic, not a pain or comfort issue (except for shoe fit)
it's a shame we can't just celebrate our little quirks.

His podiatrist did the surgery. He's no longer with us, he's gone to the happy hunting ground. Speaking of knees, I'm having my right one replaced Feb. 11th.

My mother was amazed how much her mobility improved after her knee was replaced.
Now she WALKS all over the store when she goes shopping--and she's 85!