Charcot-Marie-Tooth Disorder

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Les

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I have CMT disorder. It is a rare, inherited and incurable degenerative nerve disease. My Dad developed it about 20 years ago and how he can barely walk without a cane or walker. He is 92 and is practically confined to his easy chair, even though he is otherwise healthy and mentally sharp as a tack. He was older than I am when he was diagnosed, He had no idea he was at risk for this and since it is rare, it was not detected early and before his diagnosis, he underwent several (unnecessary as it turned out) surgeries.

I have an appointment with my Doctor, who I will have refer me to a neurologist for proper diagnosis. If I get to the point where I think I can't fly safely, I will self-ground, but I am looking for advice regarding my appointment. Are there drugs (pain killers) he may prescribe that would ground me? If he prescribes one, should I ask for a different one? Would I need to notify the FAA as soon as I have a diagnosis, or just report it when I go in for my medical next year?

Does anyone know if there are any treatments on the horizon that can help? Does early detection help? Of course, I will be asking my doctor and my neurologist these questions, but I would like the perspective of someone FAA knowledgeable. I will of course be contacting Dr. Bruce if it comes to that. I'm hoping for the best but preparing for the worst. At least, this isn't a fatal disease.
 
Les, my best friend has CMT. His was diagnosed 13 years ago and it didn't progress very rapidly until about 3 years ago. It has become pretty debilitating over the past couple of years (he just turned 70 in September), and he now wears braces on both legs and walks with a cane. He has been under the care of Neurologist Robert G. Miller, MD, in San Francisco for the past 13 years.

There are several different genetic mutations that cause CMT, and the severity and progression of the disease depends on the specific mutation(s). There are some gene therapy approaches being explored, but none are yet at the clinical trials stage.

If you haven't checked out Charcot-Marie-Tooth News, you may wish to.

https://charcot-marie-toothnews.com/experimental-treatments-for-charcot-marie-tooth-disease/
 
It is reportable immediately if you hold a FAA med certificate. You should clear any meds with your AME if you desire to fly and be treated. I know of no new treatments for such. A SI will likely be needed to continue to hold a medical. As a general summary, it is likely to be be granted if you have no symptoms or signs of the disease.
 
Concur with LBF above.
Short of gene alteration, this is a progressive disease. You can fly until it becomes apparent that you can't satisfy the SI for this one.

I usually use a (MP4) movie of the airman preflighting and egressing the aircraft, which I consider essential for this situation. I consider part of my job, to adivse the continually certified airman, when he should NOT reapply.
 
Thanks @lbfjrmd and @bbchien

I saw my primary doc today. He ordered a bunch of tests and referred me to a neurologist (and an optometrist, and a radiologist, and a gastroenterologist).

He also recommended gabapentin for pain. I declined the script for now because the pain is not too bad so far, and I wanted to check to see if it is a prohibited med.

On another note, I currently have a valid class 3 medical. Is basic med an option for me now, or will a definite diagnosis preclude me from that route?
 
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