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
Comment Reply
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
December 7, 2008 - 8:46pmNeurology
Phoenix Neurological Associates
1131 N 7th St, Suite 350
Phoenix, AZ 85006
Tel: 602-258-3354
Fax: 602-258-3368
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