Patient Resources

Newly Diagnosed


Newly Diagnosed

So you’ve recently been diagnosed with CMT. Now what?

HNF has developed the following roadmap to support you during, what can seem like, a very overwhelming journey.

Although many people are initially diagnosed via EMG test by a neurologist, the only way to confirm a diagnosis of CMT & it’s subtype is via genetic testing. Want to learn more about getting tested? Visit the CMT Genie.

Neurotoxic Drugs

Neurotoxic drugs, substances that cause damage to nerves, act directly on individual nerve cells by interfering with membrane proteins.

This list is intended to alert patients with CMT about medications and supplements that might worsen their CMT and may be harmful to their muscle strength, sensation and function, possibly resulting in severe muscle atrophy, fatigue and pain. It is important that you familiarize yourself with this list and share it with all of your treating physicians for consideration when prescribing therapies to treat both your CMT symptoms, as well as any other diagnosis or condition.

There are DOZENS of neurotoxic drugs listed. Some of the most common may include:

  • Fluoroquinolones (class of antibiotics) such as Cipro
  • Excess amounts of B6
  • Certain Statins

Your top priorities

How is your recent diagnosis or CMT symptoms impacting you most? The experience of a CMT diagnosis looks different for everyone.

Some individuals may experience foot drop, while others are struggling with pain, deformities, fatigue, etc.

It can be helpful to make a list of the top ways CMT may be impacting your life starting with what is having the most impact.

Feel free to use the sample list below and rate the following on a scale of 1-10 (10 having the most negative life impact).

Learn more about your top priorities, in HNF’s Patient Resource section. We’ve been developing valuable & educational content for over 20 years based on what matters most to the CMT community.

Connect with others who can empathize and understand the challenges & nuances of living with CMT. You are never alone.

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Once you’ve become more empowered, become part of HNF’s mission!

Join GRIN!

Turning symptoms into science.

Without your participation, researchers won’t have the essential and necessary patient information to develop drugs, gene therapies, and clinical trials for Charcot-Marie-Tooth and other Inherited Neuropathies!

Genetic Testing – CMT Genie

Wish there was an easy guide for genetic testing?

Now there is with the CMT Genie!
HNF’s CMT Genie is designed to assist you and your health care provider determine what the best option is for you!

CMT Thrive Guide

There’s no single approach to wellness and CMT. That’s why our team at HNF works year-round creating a wide and valuable range of programs, resources and research to serve the Charcot-Marie-Tooth community.

Learn more on this topic

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