Tremors are fairly common in people with CMT, and can intensify when the person is nervous, cold or tired. CMT expert neurologist, Dr Richard Lewis writes, “Clinically, when someone has CMT and a tremor, they sometimes call this Roussy-Levy Syndrome. Tremors are thought to occur because of decreased sensory input to the brain about where fingers are in space (pseudoathetosis) so that fingers (and sometimes legs or trunks) have tremor. Please consult your neurologist to understand if your tremors are CMT-related. “
Genetic counselor Shawna Feely adds, ” It is possible for only one person to have a tremor, despite everyone having the same type of CMT, because of CMT’s variability of symptoms. If CMT is the cause of your tremor, it can still be treated with medications that help with other forms of tremor (Parkinson medications for tremor).
The severity of symptoms of people in the same family with the same type of CMT can vary greatly from one person to the next. The Inherited Neuropathies Consortium (INC), which is part of the National Institutes of Health’s Rare Diseases Clinical Research Network (RDCRN) is trying to understand why this is by doing a genetic modifier study. They collect samples of DNA from people with CMT. They can screen the DNA through a process called GWAS to look for other genes that may contribute to more or less severe symptoms. This may lead to a better understanding and treatment of CMT in all its forms. If you are interested in participating, you should contact a CMTA Center of Excellence, participating in the INC. https://www.cmtausa.org/living-with-cmt/find-help/cmta-centers-of-excellence/ “
If you have not yet registered online with the Inherited Neuropathies Consortium (INC) Patient Registry, where CMT expertneurologist and researcher, Dr. Shy and colleagues continue working to research the many unknowns in CMT, here is the link: https://www.rarediseasesnetwork.org/cms/inc
It is easy to join, and free, and there are studies that come up periodically where they need feedback from the patient community.