ssdave - I really encourage you guys to try the diet/exercise/supplement approach. Even though I am not fixed yet I have been reading so much lately about how the body really wants to heal itself, we just need to give it the right tools to do so. Our culture pushes poison, whether it's in the grocery store isles (food & household cleaning/personal care products) or at the pharmacy. In America something has to be proven to be Harmful before it will be investigated & potentially pulled from the shelves vs. Europe & many other countries where products must first be proven Safe before they are allowed anywhere close to being distributed/sold to the masses.
We have to educate & take care of ourselves. It's tedious, frustrating & sad... but getting toxins out of our homes & bodies is key to healing.
Thankfully we have the internet & intelligent, helpful folks to guide us along the way.
Additionally - in my (albeit brief) research of this world of PN I have found many studies/testimonials where individuals have found relief with magnet therapy, acupuncture, the Rebuilder & Anodyne therapy. I understand that everyone reacts differently to every potential solution but these are drug free things that are high on my list to try should my lifestyle changes not make a dent in my current PN situation.
Peace!

It has been found that many people have this error, and cannot methylate B12 and folic acid to their active forms so they can work properly in the body.

Let's look at numbers. It was thought 10% at least have this error (called MTHFR polymorphism), but now the number is increasing and up to 30% is now suggested by some new research.

What does that mean? Take a stadium full of people. Average size now is 100,000. 10% would be 10,000 in that stadium would have this genetic error. One of the first signs of inadequate B12 is neurological. Over time having low B12, would lead to insomnia, elevated homocysteine, and damage to arteries and hence cardiovascular events. Anemia comes rather late in low B12 patients. But it does arrive eventually.

If you have this error, your body cannot perform certain functions. When long standing, it affects the spinal cord and is called :
http://en.wikipedia.org/wiki/Subacut...of_spinal_cord

This happened to many thousands of Japanese in the early '70's from common use of a drug called clioquinol. (it was taken off the market here at that time). Hence the Japanese have done much research on B12 and as a result have a higher cut off for "normal" than our 400pg/ml. Many people in Japan died or were permanently maimed/blinded by this event.

We know about the methylation issues now, but 15 yrs ago it was not common knowledge. The work on the human genome has been one reason we have more understanding.

Methylation is the moving of a --CH3 group around the body to do many metabolic jobs.
http://en.wikipedia.org/wiki/Methylation
If you search "methylation" on Google you will find quite a bit of
complex chemical papers and sites. But here we deal mostly with the methylation of B12 and folic acid.

Remember we are chemical factories. And mRNA delivers information to the cells, to make new compounds to do many jobs, and this involves that methyl group (one carbon and 3 hydrogen molecules).

Hi Mrs. D.
Do you know if 23andme test for CMT. I was on the link but can't seem to find anywhere what exactly they test for. Maybe I'm missing it?
As always Thank You

I think you will have to contact them and ask.

The DNA typing only looks at certain parts of the genome.

23andMe does do Parkinson genetic testing. Our PD forum participated in that a while back. But for details, you'll have to ask them.

There are "levels" of inquiry with different prices there.

Athena Diagnostics are the only ones who test for most all of the types of CMT. And there are many and if you have to test for all of them it is very expensive. They have a patent on them. www.athenadiagnostics.com. You can give them a call and they are more than willing to answer any questions you may have.

They told me that Baylor University out of Houston, TX tests for some of the types of CMT. However, they use a different methodology (way of testing) than Athena Diagnostics.

*edit*

Hope this helps.

The the original poster, I feel that I am in the same boat and just want to extend my sympathy.

I have L carnitine and alpaha lipoic acid but I find that you guys discuss different kinds here on the forum. I hope I haven't wasted my money completely. I can't seem to find R lipoic acid in the health food stores
just a note - Inno-Vite makes a complex with Co q10, vit E, Carnitine, and vitamin C
Its quite expensive ($32 Canadian) my sister bought it for me as a gift. I took it for a while but didn't feel results so gave up and started on the alpha lipoic acid again.



Sigh...everything is so hit or miss isn't it. Good luck

I suffer from idiopathic peripheral neuropathy, was diagnosed 3 years ago and have refused taking Lyrica. So far I have no pain to speak of but the numbness that started out in my toes of both feet have now spread to the feet. I take no medication. I have heard much about R-Lipoic Acid, L- carnitine and Ubiquinol. When does one take these supplements, before or during or after meals ?
Anyone with success stories, please share. I know there's no cure for this disease, especially when it's idiopathic.

The cause of a neuropathy simply means that it cannot be identified and is therefore labeled idiopathic neuropathy.

Yes, idiopathic just means they do not know your cause. You might find a cause if you find other doctors.

Start with diet and cutting sugar and junk carbs, check the A1C in a blood test. Also, you can check glucose level after meals at one hour and two to see what foods you need to stay away from. Potatoes, sugary drinks, rice, breads.... Even if blood sugar level is always good, cutting these are always good for the nerves.

Cutting out gluten is good to do also.

If you find an integrative MD that knows the blood tests to give, supplements and diet information, it would be great. So many things you can test for with vitamins, etc.

Always stay hopeful. Everyone is different and taking good supplements, eating VERY good, organic foods, greens, not eating junk, staying away from chemicals like things you spray in the air, cleaners, etc, meds that might be a problem... all kinds of things we can do to help the nerves get rid of toxins, get circulation and blood flow so toins can be carried away. We can just do all that is possible. Minding my Mitochondria is one book I really like.

Learn all you can about nerve health. This is a great place!

Hello my name is Angelique,
I have been an LPN for over 12yrs. I started getting odd symptoms last Aug. I was sent everywhere everyone was stumpted. I left work on sick leave. My last hope was the Mayo clinic. It took 12 days but they found it. I have an aggressive form of pots. Now I an getting to the helpful
part since most docs are not sure how to treat us sometimes We have to think outside the box.I have 10 herbal books on anything from cooking,cleaning and health treatments.
Now always check with your doc first. You may have to give him or her the information about what herb you want to use most docs have to focus on scripts. So they need to know what you want to take,why you want to take, and dose. Now from other sites I have heard that a root called witches broom helps with the mood swings. valerian root helps with sleep. Since I live in IN it can be difficult to find what I need. But Chicago has a large herbal shop in China town. The owner is a doc plus trained for many years for herbal medicines. If you can find an herbal expert thats great or a Md even better but if the person just owns the store be careful herbal drugs are just as dangerous as scrips drugs. Some just do not mix. Just
educate yourself.I want to stress that you need to keep the Doc in the loop.
Hope this helps a little