I was diagnosed with CMT

After several years and even more doctors, I have been diagnosed with CMT http://www.charcot-marie-tooth.org/index.php

This is on top of Type 1 Diabetes. I had started to think I was maybe a hypochondriac since my symptoms were so odd and seemingly unrelated. The sad thing is I have ben to doctor after doctor and they just said I had diabetic neuropathy. I knew in my heart that wasn't the case. I recently saw an all new very young doctor and he knew what my problem was in 15 minutes! Can you believe that? I'm just glad to finally know the truth. I feel vindicated.

Hi Royce!  It's nice to see you around again.

I'm glad to hear you finally have an answer.  So what does this mean for you treatment-wise, etc.?  I'm sorry to say I know very little about this disease - in fact, visiting the website you linked to marks the first time I've heard of it.

Best wishes.

Thank you Kim. To be honest I hard never heard of it either until I was diagnosed. So far, I am on Lyrica and it seems to help somewhat. As you probably read, there's no cure and not a whole lot they can do for me right now. Unfortunately I am in that small percentage that has most all of the symptoms. My balance has improved and as of right now, the nausea and vomiting have subsided. That was one of the worst things, the vomiting. I would take my insulin and eat then throw up and my sugar would bottom out. I am feeling better, but I have no idea how long that will last. My feet are still hurting pretty bad at times, b ut, not as bad as they were before I started taking Lyrica. I'm just trying to remain positive. Thanks for your kind words. 

I'm so sorry to hear about that. I'm also sorry that having T1 "clouded" your doctors diagnostic assessment. It sounds like they weren't able to really look at your symptoms b/c they automatically thought -- neuropathy!

I hope you can find good care. Let us know how you're doing!

Thank you Sarah, that is much appreciated!



Hi Royce -

I'm sorry to hear of your medical troubles. It's not fun to go to doctor after doctor without getting an answer, especially when you know it's something else in your gut. I'm very glad to hear that you finally got a diagnosis! I'm like everyone else here - I've never heard of CMT. The website link you provided was very informative. It must be difficult to balance your diabetes with the CMT, but you sound/seem like a fighter :D Just know you can always find support here. Keep us posted with how you are doing! I'm rooting for you.

~ Anna

Thank you Anna! Your positive words mean a lot to me!