Can someone help my Husband? He's got Charcot-Marie-Tooth Disease (CMT)(Also known as Hereditary Motor and Sensory Neuropathy (HMSN) or Peroneal Muscular Atrophy (PMA)

I noticed in some of the clinical trials for CMT that the researchers were studying CoQ10 supplements, as well as some vitamins...there may be something out there that is an "alternative" medicine via clinical trials that your hubby can try.

Wow! The information Alison provided was an eye-opener. Like you Michelle, I have been trying to find answers for my husband's ALS. We have learned recently from an article in the LA Times, that the ALS cases among Veterans are linked to a few toxic substances one being Pyrodogstigmine Bromide. The article stated that this product was used with the troops during the first Gulf-War.

My personal quest for a cure or any treatment that could slow down or stop the progression has taken me in different directions. Nothing in mainstream medicine has offered hope. Research continues and after millions on dollars spent for years since Lou Gerhig's was diagnosed with it, there is nothing available to give us hope.

Like you, it is very painful (emotionally) to see a love one, especially our hubbies, become so frail and in my husband's case, totally paralized, unable to chew or swallow his favorite foods, breathe on his own, move his body, talk, etc. The two diseases are motor-neuron related but ALS is faster progression and has no pain associated with its symptoms.

My focus at the moment is on eliminating cellular inflamation with effective nutrition and nutriceuticals such as CoQ 10 supplementation, Omega-3 oils, Turmeric, CDP Choline, B-12, Noni Juice, among other alternative protocols such as far-infrared path treatments and we are testing a new product that helps athletes with muscle building. These are patches that use nanotechnology. They are made by LiveWave (I could swear I have seen some results since he started using them a month ago!). We are committed to trying anything while we wait for stem cell or a ground breaking cure.

There is another possible product I have read tons of research on and I know the MDA is funding a study with this product for another neuro-muscular disease, is IGF-1. More especifically a drug called IPLEX. Due to patent-related issues, the product was taken off the American market a couple of years ago. But the three companies involved in the litigation have agreed to allow the selling of the product for ALS thanks to the efforts of hundreds of PALS (persons with ALS) and their families who via a successful mailing campaign pressured them to release IPLEX. As soon as FDA provides guidelines, neurologist will be able to prescribe it for ALS as on off label drug. By the way, IGF-1 also sells under the name of Increlex (but does not contain the BP3 binding protein that IPLEX has which shows to be more effective for ALS cases). IGF-1 is prescribed for children who lack normal growth, it is FDA approved. With all that said, I wonder if IPLEX would work for your CMT?

How about stem cell therapy? Have you looked into this? Bone marrow stem cell treatment seems to be working on same conditions.

Hi Alison,

You rock! I can't believe all the information you found. I've been searching for years but must admit, since starting EmpowHer, I've been remiss in my search. There is so much more available today, then there was 4 years ago. It's amazing how the internet is connecting us to such great resources. Even down to finding two doctors who specialize in CMT in Phoenix. That's pretty extraordinary.

I'm so excited to read all the information you found for me. I want to wake Ed up to tell him, there's hope. I think I'll wait until morning, since rest seems to help his legs a lot.

I just knew that if I posted this on EmpowHer, all of you who moderate our site and resource EmpowHer women, every single day...would be able to help me as well.

I've watched how you all work and I want you to know from me how important your work is and how well you all do it. You are changing women's lives every single day. You should feel so proud...each and every one of you!!

I'll be back in touch to talk about my findings. We need to share this information with everyone. I never knew so many people we effected by Charcot Marie Tooth.

Thank you again, Alison!

Michelle

Michelle,
I am so sorry to hear about your husband. I hope we hear from other women and men who are experiencing the effects of this disease. I just read that CMT is the most commonly inherited peripheral neuropathy, estimated to affect one in every 2,500 people approximately 2.6 million people worldwide. (CMT is a progressive disorder that causes the nerve cells leading to the body's extremities to slowly degenerate resulting in the loss of normal use of the feet/legs and hands/arms. It may also lead to a loss of sensory nerve function and deformities. CMT strikes people of all ages, genders, races and ethnicities).

1) Have you looked into the Charcot-Marie-Tooth Association (CMTA)?

The CMTA, headquartered in Chester, Pennsylvania, is a 501(C)(3) nonprofit organization founded in 1983. The CMTA goals include providing patient support, public education, promotion of research, and ultimately the improved treatment and cure of CMT. The organization is led by an Executive Director and governed by a voluntary Board of Directors (BOD), and an international Medical Advisory Board (MAB) comprised of over fifty clinical and research professionals in specialties such as neurology, genetics, orthopedic surgery, physiatry, physical therapy and podiatry. The CMTA Scientific Advisory Board (SAB) is comprised of senior scientists with extensive research experience related to CMT. An External Advisory Board, made up of internationally recognized scientists, serves in an advisory capacity to the SAB. The CMTA has more than 15,000 patients and families, supportive friends, and medical professionals in its member database.
For more information, visit http://www.charcot-marie-tooth.org/ or call 1-800-606-2682.

2) I am sure you have also consulted the Muscular Dystrophy Association (MDA) http://www.mda.org/disease/cmt.html. The MDA website has a list of recent articles/publications/clinical studies regarding efforts to cure CMT.

3) Another resource is the National Institute of Neurological Disorders and Stroke (NINDS), and states they are currently conducting research to find clues on how to reverse muscular dystrophy:
http://www.ninds.nih.gov/disorders/charcot_marie_tooth/charcot_marie_tooth.htm

4) There is also a book: "The Official Patient's SourceBook on Charcot-Marie-Tooth Disorder" (2002) that may offer some information (ISBN-13: 9780597830044), and sells for about $25.

5) Here is a list of the current clinical trials for CMT:
http://clinicaltrials.gov/search/open/condition=%22Charcot-Marie-Tooth+Disease%22. This information may be helpful, as you can review what drugs, supplements or alternative medicine is currently being tested (and, is a good starting point to ask your doctor).

6) Does your husband have a good doctor, who is knowledgeable about CMT? If not, the CMT organization has a "find a doctor" for your state. I looked up Phoenix, Arizona, and there are two doctors (there are many others in other AZ cities). Go to http://www.charcot-marie-tooth.org/ and click on "Resources" in the left toolbar:

Todd D Levine, MD
Neurology
Phoenix Neurological Associates
1131 N 7th St, Suite 350
Phoenix, AZ 85006
Tel: 602-258-3354
Fax: 602-258-3368

David S Saperstein, MD
Neurology
Phoenix Neurological Associates
1131 N 7th St, Suite 350
Phoenix, AZ 85006
Tel: 602-258-3354
Fax: 602-258-3368