I was only diagnosed with Charcot Marie Tooth 1 years ago because the doctors I consulted in regional Australia, where I live, have no idea about CMT. I was treated for 30 years for arthritis - God, I was so angry. I now have a spinal cord stimulator in my back to lessen the pain of the Scoliosis and lower back pain, next trip to my pain specialist will be to find some medication to help my peripheral neuropathy in my legs. I've been taking Gabbapentin and one doctor questioned why I was taking it because I am not a diabetic. Now my speech is being affected and I can't get my words out. This is another symptom of one of the many conditions associated with CMT, and was not supposed to be associated with my Type 1A, but it is. I suffer with severe fatigue and that's when my speech is affected - I just can't talk. I was diagnosed with cancer in my left eye earlier this year, hence the different shape. It was cancer over the tear duct but I'm not sure if that was associated with CMT.
Does anyone else with Type 1A CMT have speech problems? I use a machine to try and strengthen my lungs because I have problems breathing at night. All the tests under the sun over the past 2 years have proved negative, but I know it's the CMT progressing, so I have to sleep sitting up. Lying flat on my back and I end up having a panic attack because I can't breath. This is a very debilitating disease and doctors just don't know enough about it.