Newly Diagnosed
A CMT diagnosis can feel like a lot to take in, and whatever you are feeling right now is valid. Some people are overwhelmed. Others are quietly relieved to finally have a name for something they have been living with for years. Both reactions are normal, and neither predicts how you will do from here. The most useful thing to know on day one is that CMT is manageable, and that you are not the first person to walk this road. There is a well-worn path through it: confirm the diagnosis with genetic testing, learn which medications to avoid, work out which symptoms actually affect your daily life, build a care team that understands the condition, and find other people who live with it. None of that has to happen this week. This page is your starting point, a clear roadmap built by HNF over more than 20 years alongside the CMT community.
At a glance
- It is normal to feel overwhelmed, confused, or even relieved to finally have a name for what you have been experiencing.
- Genetic testing is the only way to confirm CMT and learn your subtype. Start with CMT Genie.
- Download the CMT Neurotoxic Drug List early and share it with every doctor, dentist, and specialist you see. See neurotoxic drugs.
- CMT affects everyone differently, so list your top challenges and rank them by impact. The symptom checklist can help.
- CMT is best managed by a care team, not a single doctor. Find one through our Centers of Excellence.
- Connecting with others who live with CMT reduces isolation and speeds up finding what works.
- Joining the GRIN Registry is one of the most meaningful things you can do right now.
Start here
A CMT diagnosis can bring a mix of emotions. Some people feel overwhelmed or confused. Others feel relieved to finally have a name for what they have been living with. All of it is normal.
The good news is that you are not navigating this alone, and there is a clear path forward. Think of the steps below as a roadmap, built by HNF over more than 20 years of working alongside the CMT community. Take them one at a time.
Step 1: Confirm your diagnosis
Many people are first diagnosed through an EMG, a test that measures the electrical activity of your nerves and muscles, ordered by a neurologist. An EMG can strongly suggest CMT, but it cannot tell you which subtype you have.
The only way to confirm a CMT diagnosis and pin down your specific subtype is genetic testing. CMT Genie walks you through how to get tested, often at no cost to you.
Knowing your subtype matters. Different subtypes affect the body in different ways, and as research advances, treatments are increasingly being developed for specific genetic variants. For a full breakdown of the different forms of CMT, visit CMT types and subtypes.
Step 2: Learn about neurotoxic drugs
Some medications and supplements can harm nerve cells by interfering with the proteins in nerve cell membranes. For people with CMT, certain common drugs may worsen symptoms and lead to more muscle weakness, loss of sensation, fatigue, or pain. This is one of the most important things to know early.
HNF maintains a CMT Neurotoxic Drug List. Download it, review it, and share it with every doctor, dentist, and specialist who treats you. A physician prescribing for an unrelated condition may not know you have CMT, and some routinely prescribed medications can be harmful.
A few commonly encountered examples: fluoroquinolone antibiotics, high doses of vitamin B6 (pyridoxine), which can itself damage peripheral nerves, and certain statins used to lower cholesterol, though the risk there varies by person. Dozens of substances are on the full list. Always check with your neurologist before starting any new medication or supplement. Our full guide to neurotoxic drugs has the details.
Step 3: Identify your top challenges
- CMT affects every person differently. Some people experience foot drop, which is difficulty lifting the front of the foot when walking. Others deal mainly with pain, foot deformities, fatigue, or reduced hand strength. Rates and severity vary by subtype and from person to person.
- A useful early exercise is to list the ways CMT is affecting your life right now and rank them by impact. This helps you focus your energy, prepare for appointments, and find the most relevant resources. The symptom checklist is a good place to start. Common areas where CMT has an impact include:
- Pain management
- Foot drop and foot deformities
- Exercise and physical therapy
- Finding a CMT specialist or care team
- Emotional and mental health
- Employment and workplace accommodations
- School, college, and educational accommodations
- Family planning
- Raising a child with CMT
- Dating and relationships
- Adaptive shoes and products
- Accessibility and travel
- Driving
- Everyday tasks and home accessibility
Step 4: Build your care team
CMT is best managed by a team of specialists rather than a single doctor. A good starting team often includes a neurologist, ideally one with neuromuscular experience, an orthopedic specialist or physiatrist (a doctor who specializes in physical medicine and rehabilitation), and a physical or occupational therapist.
Depending on your symptoms, you may also benefit from a podiatrist, an orthotist (a specialist who fits braces and other supports), or a genetic counselor. Ask your primary doctor for referrals, and let HNF's resources guide you on what to look for.
To find clinicians who truly understand CMT, start with our Centers of Excellence. When you see any new provider, always mention your CMT diagnosis and bring or send them the Neurotoxic Drug List.
Step 5: Connect with the community
Knowledge and connection make a real difference. Connecting with others who understand what it is like to live with CMT can reduce isolation and help you find practical strategies faster than navigating alone.
Follow us on social media to stay connected with the CMT community, and subscribe to our newsletter to hear about upcoming events happening in your area. We hope you will join us at one of our annual CMT Summits: there is nothing quite like meeting other families face to face. In-person gatherings offer a chance to trade stories, pick up hard-won tips, and build friendships with people who simply get it.
About research and a future cure
There is currently no approved cure for CMT, and no drug has yet been approved specifically to treat it. Even so, research is moving faster than at any previous point in CMT history. Gene therapy and other targeted approaches are in active development for several subtypes, and HNF-funded scientists are working toward treatments that address the root genetic causes.
Joining the GRIN Registry, the Global Registry for Inherited Neuropathies, is one of the most meaningful things you can do right now. Researchers use GRIN data to design trials, identify candidates, and understand how CMT progresses. Your participation helps accelerate the path to treatments for everyone with CMT.
Step 6: Pay it forward
Once you feel more grounded, there are many ways to become part of HNF's mission and help others who are where you are today.
You can take part in research through GRIN and other HNF studies, join Team CMT to raise awareness and funds, host a fundraiser in your community, or volunteer with HNF. Every bit of it moves the whole community closer to a cure.
Frequently asked questions
I was just diagnosed with CMT. What should I do first?
It is normal to feel overwhelmed, confused, or even relieved to finally have a name for what you have been experiencing, and you are not navigating this alone. A good roadmap is to confirm your diagnosis with genetic testing, learn about neurotoxic drugs, identify your top challenges, build a care team, and connect with the community. Take the steps one at a time.
Do I need genetic testing if I already had an EMG?
An EMG measures the electrical activity of your nerves and muscles and can strongly suggest CMT, but it cannot tell you which subtype you have. The only way to confirm a CMT diagnosis and pin down your specific subtype is genetic testing. CMT Genie walks you through how to get tested, often at no cost to you.
Why do I need to know about neurotoxic drugs?
Some medications and supplements can harm nerve cells and worsen CMT symptoms, leading to more muscle weakness, loss of sensation, fatigue, or pain. A physician prescribing for an unrelated condition may not know you have CMT, so this is one of the most important things to learn early. Download HNF's CMT Neurotoxic Drug List, review it, and share it with every doctor, dentist, and specialist who treats you.
What kind of doctors treat CMT?
CMT is best managed by a team of specialists rather than a single doctor. A good starting team often includes a neurologist with neuromuscular experience, an orthopedic specialist or physiatrist, and a physical or occupational therapist, with a podiatrist, orthotist, or genetic counselor added as needed. To find clinicians who truly understand CMT, start with our Centers of Excellence.
Is there a cure for CMT yet?
There is currently no approved cure for CMT and no drug yet approved specifically to treat it, but research is moving faster than at any previous point in CMT history. Gene therapy and other targeted approaches are in active development for several subtypes. Joining the GRIN Registry is one of the most meaningful things you can do right now, since researchers use its data to design trials and understand how CMT progresses.
Start with your subtype
The most useful first step in living well with CMT is confirming your subtype. From there, the right care and research opportunities fall into place.