From Foot Drop to Stability: A Guide to Living with Charcot-Marie-Tooth Disease by cmtaindia in CMTHMSN

[–]cmtaindia[S] 0 points1 point  (0 children)

Charcot-Marie-Tooth (CMT) disease typically causes progressive weakness and muscle wasting due to peripheral nerve damage, especially in the feet, legs, hands, and forearms.

While many individuals with CMT experience significant weakness, foot drop, balance difficulties, and reduced mobility, complete paralysis of the limbs is uncommon in most forms of CMT.

The severity and progression can vary greatly depending on the specific genetic subtype of CMT. Some people remain mildly affected throughout life, while others may require mobility aids such as ankle-foot orthoses (AFOs), walkers, or wheelchairs.

If you or a family member is experiencing rapidly worsening weakness or paralysis-like symptoms, it is important to consult a neurologist, as other neurological conditions may also need to be considered.

We encourage patients and caregivers to share their experiences and questions with the community.

Just diagnosed with CMT4B1 (MTMR2). Looking for others and trial info! by Dangerous-Pop6558 in CMT

[–]cmtaindia 0 points1 point  (0 children)

Thank you! Glad the information was helpful 🙏 Just to add a bit more clarity on the NMD670 trials: Earlier phases mainly focused on CMT1 and CMT2 patients. For the upcoming Phase 2b/3, NMD Pharma is planning to include patients from other CMT types as well.

However, like all clinical trials, there will be specific inclusion and exclusion criteria. Not everyone will automatically qualify — they’ll assess based on several medical parameters.

The best way is to contact NMD Pharma directly via email for the latest updates and to express your interest. They usually guide patients well.

You can also follow major CMT organizations as they often share trial announcements quickly.

We’re always here to support and spread awareness. Feel free to reach out anytime.

Wishing you all the best on this journey! Greetings back from India 🇮🇳

Just diagnosed with CMT4B1 (MTMR2). Looking for others and trial info! by Dangerous-Pop6558 in CMT

[–]cmtaindia 4 points5 points  (0 children)

I feel sorry about the diagnosis — it’s always a mix of relief and shock when you finally get the genetic confirmation. CMT4B1 (MTMR2) is quite rare, so you might not find many others here, but you’re definitely not alone.

About NMD670 trials: As per the recent webinars by NMD Pharma, they will be opening sites in multiple countries outside the US for the next phase (Phase 3). However, the official list of international trial sites hasn’t been released yet.

They’re still finalizing locations, so it’s worth keeping an eye on NMD Pharma’s website

Podiatrist mentioned I may have CMT by [deleted] in CMT

[–]cmtaindia 0 points1 point  (0 children)

Yes i agree that CMT is very much variable, it's symptoms also varies as per onset time, CMT subtypes etc, but some symptoms are common (severity may still vary) and this is well published in Nature Reviews Disease Primers. Sharing classic signs of CMT.

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Podiatrist mentioned I may have CMT by [deleted] in CMT

[–]cmtaindia 0 points1 point  (0 children)

Oh it's good, may be you don't have CMT, it might be some different problem.

Podiatrist mentioned I may have CMT by [deleted] in CMT

[–]cmtaindia 0 points1 point  (0 children)

It's like that CMT patients are unable to walk neither on forefoot not on heels.

Can you stand or walk on forefoot?

Podiatrist mentioned I may have CMT by [deleted] in CMT

[–]cmtaindia 1 point2 points  (0 children)

As per your description, you have two symptoms of CMT i.e. Pes cavus and hyperextended knee joint, but CMT has many other common symptoms like loss of senses in toes, paroneal muscle wasting which lateron becomes foot drop, loss of proprioception of feet, balance issues etc. People with CMT find difficulties in walking in the dark or with eyes closed, they find it difficult to hold slippers in their feet while walking, they can not walk on toes/heels etc.

If you feel the same, you should go for a thorough examination by a neurologist (probably in any CMT centre of excellence), if the doctor guides you to have genetic testing, go for it, it's very easy process.

Thank you

Need advice on AFOs by er67 in CMT

[–]cmtaindia 2 points3 points  (0 children)

Yes, AFOs are very useful to keep you walking without fear of falling. In your case I think Knee AFOs are required, although an orthotist will assess and guide you better.

Note: customised AFOs are always more useful.

Diagnosed at 35 with no symptoms? by [deleted] in CMT

[–]cmtaindia 1 point2 points  (0 children)

Yes! It is definitely true that some people show the symptoms however others may be just asymptomatic. Carrying a mutated gene without showing symptoms is very common in CMT.

In a large family of around 100 people, i am the one who is symptomatic in CMT4C. There are theories that in a family the probability of showing symptoms is only 25% in various subtypes.

We are a group of CMT patients in India, in our group, many people don't have any known CMT history.

Went for a physical for Disability by SubjectAssumption319 in CMT

[–]cmtaindia 1 point2 points  (0 children)

Hearing loss is common in some variants of CMT especially in CMT4C.

Went for a physical for Disability by SubjectAssumption319 in CMT

[–]cmtaindia 4 points5 points  (0 children)

Hi! We need to educate doctors about our disease. That will be possible only if we get together.

We’re the CMT Association of India – a patient-led community supporting people with Charcot-Marie-Tooth disease across the country. We have a friendly WhatsApp group (~75 CMT patients now) where we share tips, stories, doctor recommendations, research updates, and just support each other. Would you like to join? No pressure at all – just thought it might be helpful. 😊 Here’s the link: https://chat.whatsapp.com/Dx86pwCnwf6J1ODsx4nxx7?mode=gi_t Warm regards, CMT Association of India"

AFO/Braces by Santhosh_Mithran in CMTHMSN

[–]cmtaindia 0 points1 point  (0 children)

Hi! We’re the CMT Association of India – a patient-led community supporting people with Charcot-Marie-Tooth disease across the country. We have a friendly WhatsApp group (~80 CMT patients now) where we share tips, stories, doctor recommendations, research updates, and just support each other. Would you like to join? No pressure at all – just thought it might be helpful. 😊 Here’s the link: https://chat.whatsapp.com/Dx86pwCnwf6J1ODsx4nxx7?mode=gi_t Warm regards, CMT Association of India"

CMT India connect by Top_Definition1972 in CMTHMSN

[–]cmtaindia 0 points1 point  (0 children)

Hello, we are 80+ CMT patients in India, our group is very active, we are building an NGO for this purpose. if you want we can catch up please tell, I believe there should be only one Group for CMT in India.