Lunch and Learn: Neurotoxic Med List Update
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- Опубліковано 2 жов 2024
- Dr. Guido Cavaletti and Dr. Paola Alberti share updates on the newly reviewed and revised CMT Neuro-toxic Medication List. The CMTA funded a grant awarded to Guido Cavaletti, MD at the University of Milano-Bicocca to review and update the current CMT neuro-toxic medication list. Dr. Cavaletti and colleague, Dr. Paola Alberti spent months conducting an evidence-based systematic review of drugs that may be neurotoxic to people living with CMT.
can we get a link to the list
Apparently not
THKS FROM CANADA
How about telling people also about what helps like stem cell treatment, alpha lipoic acid, yes stretching and a little exercise. Regenerative therapies. Also I was told to watch out for cuts and keep an eye on cuts but cmt agencies nor nuerologists never said that tick diseases, environmental illnesses after long term of no diagnosis nor treatment causes worse nuerological problems in cmt and in other areas of the body. It's not just cmt which an environmental illness caused. It's not cmt getting worse it could be environmental illness you have causing cmt to worsen. How about speak the truth to cmt patients because I was never told about any of this. The pmp22 gene and other nerve sheath problems are caused by long haul environmental illnesses causing these issues to nerves. A cure will never be found because a cure will cause lots of job losses and the medical system will lose money. Stem cells will regenerate these nerve sheaths and pmp22 gene. How much longer are these still going to be held over our heads and keep us on edge. Stem cells is the answer for cure but this medical system does not talk about Stem cells. My holistic clinic is talking about it and treats ms and other nuerological problems.
I've diagnosed with it 4 years ago. They've already done Butch surgeries on me. I don't walk well anymore, but they still can't tell me what stage I'm in. I see here there are people that have 234. I know the doctors never told me what stage I was. They just said I had CMT, and they tried to do a bunch of surgeries on my right side, and they messed up my right side, and now I walk funny. My foot goes to the side. My toes, curl, and I'm starting to fall apart on my left side now, too. I'm in a lot of pain all the time, and I'm still trying to understand this. There's nobody that can help me in Lewiston, id. And anybody who did try to help me botched the surgeries on me and made it worse! But if there is anybody out there who knows anything I mean truly knows anything or can tell me who to go to get a test to find out exactly how severe I have this and how badly they messed up on me that would be great because I think It's getting worse, and I'm having trouble walking now, thank you.
Hello, how were you diagnosed if the doctors coudn't tell you what type of CMT condition you have? The only way to find out for sure is by doing genetic testing and then the test will show if you have CMT type 1A, 1B...etc. Then after that you need to find an Orthopedic surgeon and a Neurologist that specializes in CMT (many orthopedic surgeons don't know how to treat this condition, but they'd still want to do surgeries on you and take your money). There may not be any CMT-specialized doctors in the area where you live, so you may need to travel to other States/cities to be seen by CMT specialized doctors.
Thanks from Mexico. I have CMT2F 🙃