I wanted to add two things: First–my Dr. started me on a lower dose. It is as of very recently that I increased my ALA; also, I have not notice a wierd odor yet– but you have me curious now—so I’ll be sniffing. LOL

I absolutely swear that Alpha Lipoic Acid had done wonders for me. Dr. Lewis from Wayne State University in Detroit, Michigan is my Neurologist. He currently has me on 600 mg 4 times a day. That’s 2,400 mg per day. And he said I could take an additional one each day if needed. I also take Gabapentin, also called Neurontin. I was on a total of 3,600 mg daily of that but I have been able to decrease it (1,200mg) so far each day. I know it’s from the help of the ALA. You can buy ALA at most drug stores or department stores but I get mine on line as I get a better deal (buy one get one free).

Does ALA help with numbness in the feet too or just pain? Lori

I can say for certain that Alpha Lopaic Acid has helped with my nerve pain. I currently take 3,600mg of Neurontin and 600mg of Cymbalta and my nerve pain was still pretty bad at times. My doc didn’t want to increase my Neurontin and was talking about changing my meds. I said I wanted to wait a month or two before I decided. In the meantime, I tried the Alpha Lopaic Acid- 600mg. It noticably took the edge off. I called my doc- (Dr. Lewis at Wayne State University) and he said I could actually take it up to 1,800 mg. Right now I am taking 1,200mg but I just increased it so I can’t say if it will lessen any more or not.

there’s lots of info on the web of using ALA for the neuropathy—many places use it in the doses you were describing for that. I personally did not notice a difference with it….but this is a strange disease and different stuff works for different people : )

Hello folks,
I was out of the forum for some time, but I want to share this I´m trying.
I quit the azatioprine (imuran), and quikly started with pains and pins and needles, so restarted the gabapentin/foxetin combo. My neuro wanted me to try de alpha lipoic acid, good for diabetes, but seems to be use as an immunemodulator too in multiple sclerosis trials.
I started ALA 2x600mg, 3 weeks ago, with no more medications (no gabpentin, no foxetin).
My pains in the lumbar area have gone. Sitll some weakness and balance problems in my legs, i´m working with a physiotherapist right now.

Best wishes, Pablo,

Jessica,

Alpha Lipoic Acid is a “recharger” for Vitamins C and E. If you take ALA then the E and C can do their specific tasks without having to do the ALA work as well. In Europe diabetic nerve pain is treated with 600 mg of ALA a day.

I changed over to 100 mg R-Lipoic acid because it seemed to work better for me. The R stands for “right” and just means they flipped the chemical direction to make it more bio available. I purchase my pills over the internet.

Remember that supplements should be a part of an overall health plan. Always ask your doctor before taking over the counter pills.

Flossie

Kristin,

My ALA dosage has changed over the years – my supplement regimen is constantly tweeked here and there. When I was very ill I took 300mg ALA a day; at the moment I am taking just 100mg a day. But if I remove ALA all together I have increased foot pain.

I have a very long post on May 20, 2006, listing all my vitamins and supplements and the reason I take them. If you cannot get that post under “Search” I can send it in a PM.

I have been taking prednisone the past 10 years. I changed last year from Neurontin to Lyrica for pain. ALA is not my primary pain medication by any means.

My neurologist knows I am taking supplements but considers it a waste of money. So did our dear Doctor David. However, even though my CIDP is here to stay, I think my overall health is much improved from when I was first diagnosed. Be sure to check with a medical professional before you take large doses of anything, even herbal or “natural”, because supplements can interfere with medications and health conditions. However, unless they can tell you a specific reason supplements are dangerous to your particular health problems do start providing your body with safe amounts of extra nutrition.

Good luck,
Flossie

Rocky,

ALA has been used safely in Europe for quite some time to treat diabetes pain. There have been quite a few American studies showing that ALA is an important factor in improving general health and longevity. As I understand it, ALA is something of a “helper” antioxidant; taking ALA frees up vitamins C and E to work most efficiently.

ALA is just part of my supplement regimen, which has been adjusted periodically. I believe I am giving my body as much of the building blocks as it needs each day to try and replace my myelin. I am aware that much of my additional supplements (and their cost) are just peed away. I still have CIDP but my overall health is as good as I can make it.

It’s not a scientific study, however when I do not take ALA – even though I am taking a slew of other antioxidants – I think I have more foot pain. Others on this forum have not seen any relief with ALA.

Taking supplements is not a one pill fits all scenario – it can even be dangerous. You have CIDP which involves specific and changing needs. Try and find a qualified Compounding Pharmacist who gives nutritional consultations.

Your neurologist and family doctors have probably not been trained to help you with specific nutritional questions. It’s up to you to find answers that might help you.

Flossie

I can not tolerate ALA. I get terrible hearburn from it. I have tried other brands and they all give me heartburn. What would be something in place of it or close to it. I have CIDP and I am taking a multi-vitamin, omega 3, Caltrate. Is it possible for the nerves to regenerate at all? I thought once a nerve was damaged or it died that it would not be able to be regenerated. Have most people with CIDP been given an MRI of their spinal area to make sure it was not something else? My doctor mentioned just recently(after 4 years) of me getting an MRI of the spine, he did do an MRI on my head to make sure it was not MS. He also took a spinal tap and the protein level was high. I believe in supplements, but always being careful of what you take and informing your doctor of what you take. Just because it is from nature does not mean it is safe.
Clare in Michigan