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Lucky us. No pain. This category includes CMT but I’m not sure that is what my brother and sister and I have. Is anyone out there suffering from HMSN who can give advice as to exercise, supplements, lifestyle, etc. Many thanks.
Hello @stefspad, Welcome to Mayo Clinic Connect. There is a CMT discussion on Connect that may offer some helpful information and you can ask questions of other members in the discussion here:
CMT=Charcot Marie Tooth Disease Type 2 Neurological Disorder form of MD
The CMTA website also has some good information on exercise and lifestyle that may be helpful:
More information on HMSN – American Association of Neuromuscular & Electrodiagnostic Medicine
You are fortunate not to have the associated pain with neuropathy. I can relate to that as I have small fiber peripheral neuropathy but only have numbness in the feet and ankles with no pain. The National Institutes of Health has some genetics information for Charcot-Marie-Tooth disease here that may provide some information that is helpful: https://ghr.nlm.nih.gov/condition/charcot-marie-tooth-disease
Have you been diagnosed or had genetic tests done that indicate you have HMSN?
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I came across an article on Facebook that recommended treating neuropathy pain with Licorice .Therefore I decided to contact the group to verfy/deny the use of Licorice in this respect. The author claims that using Licorice significantly reduces pain symptoms while lowering blood sugar levels.
In light of your extensive experience in the field, I would like to know if the treatment is familiar to you or any member and whether itis recommended.
Thank you, but my family and I are lucky enough to have a form of neuropathy with no pain. Too bad because I love licorice!
Thanks John. My sister and I have been diagnosed with polyneuropathy — that is as far as our docs will go to define this. My brother is younger (late 60s) and is just showing the first symptoms: unsteady gait and balance problems. Our mother had it, but I doubt had ever been to see a doc about it (she hated going to the doctor's). She lived to 90, eventually in a wheelchair. I — not a doc — diagnosed it as hereditary, which led me to HMSN. In an email to me @pfbacon nailed it by calling it 'the great unknown Neuropathy'… Anyway, I'm not sure we are CMT because of the late onset (60s), at least from what I gleaned from Wikipedia's HMSN page. But I will explore all the links you sent (thanks again!) and maybe learn something more that I can share with my sibs.
Hi @mironch, I am wondering if the licorice tea will have a similar effect.
I have some licorice tea – I'll make some tonight and pay attention to whether or not I have less pain. Peggy
Hi, @pfbacon I tried some last night too. Couldn’t tell if it made a significant difference for me. I will drink the tea for a few consecutive nights to determine any positive effects.
I will too. Peggy
If you are interested, the Foundation for Peripheral Neuropathy is holding the following webinar on hereditary neuropathy and genetic testing.
FPN Webinar: Hereditary Neuropathy and Genetic Testing
Thu, Sep 30, 2021 2:00 PM – 3:00 PM CDT
The Foundation for Peripheral Neuropathy (FPN) invites you to join us for a discussion on Hereditary Neuropathy and Genetic Testing. Brett McCray, M.D., PhD, will join us to share his insights into hereditary neuropathy, as well as current advances in the space which may be of interest to patients with hereditary neuropathy as well as idiopathic neuropathy. Christy Smith, Sc.M., C.G.C., will then share with us the importance of genetic testing, what it means for patients, and what to expect.
Dr. Brett McCray is an assistant professor in neurology at Johns Hopkins Medical Center whose research interest is furthering understanding of various forms of hereditary neuropathy.
Ms. Christy Smith is a board certified genetic counselor at the Johns Hopkins Department of Genetic Medicine in Baltimore, MD. She sees pediatric and adult patients, with a special interest in those with inherited forms of neuromuscular disease, retinal disorders, and pediatric cancers.
FPN thanks Alnylam Pharmaceuticals (https://www.alnylam.com/patients/genetic-testing-and-counseling-program/) for sponsoring this event.
Register here: https://register.gotowebinar.com/register/8070190365204298253
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