Two New Charcot-Marie-Tooth (CMT) Surveys Regarding Orthotics Use and Autonomic Neuropathy Prevalence: Please Share Your Experiences!
Researchers at the University of Michigan, an HNF Center of Excellence, are conducting two survey studies of patients with Charcot-Marie-Tooth disease (CMT).
If you are age 18 or older and have been diagnosed with CMT, you are invited to participate to help improve our knowledge of living with CMT.
Your responses are anonymous, and there are no costs to taking part in either survey, which are online and can be taken at your convenience. Each survey should take you about 20 minutes to complete.
- Motivations, Expectations, Satisfaction, and Impact of Orthotics in CMT: This survey aims to collect CMT patient perceptions on the use of corrective orthotics, particularly prescribed orthotics. Please go to this link to learn more and to take the survey: https://www.surveymonkey.com/r/orthoticadherence
- Survey of Autonomic Neuropathy Prevalence and Disease Burden in CMT: This survey aims to estimate the prevalence of autonomic neuropathy in CMT patients and to gather impressions of how CMT affects the lives of those living with it. Autonomic neuropathy occurs when the nerves that control involuntary bodily functions are damaged. This may affect blood pressure, body temperature control, digestion, bladder function and even sexual function. Please go to this link to learn more and to take the survey: https://www.surveymonkey.com/r/FK69KMN
I was first diagnosed with small fiber neuropathy with a biopsy, and I’m in constant pain, my feet started hurting, I fell alot and I stumble. I went to the podiatrist and he saw my legs and the atrophy and my high arched feet, my right hand doesn’t straighten either. On top of that I have end stage osteoarthritis in both knees, fibromyalgia, scoliosis in my neck, it’s straight ad a board and degenerative disc disease that hydrocodone won’t touch. I’m just tired.
I have responded to the Survey of Autonomic Neuropathy Prevalence and Disease Burden in CMT and want to let you know of a problem that the current form of the survey seems, to this layman, to have. A couple of the conditions that the survey asked about I have had or do have, but probably not because of CMT. I almost never experience dry mouth, but did when I was required to sleep on my back following total hip replacement. I believe that my impotence was a result of prostatectomy, not CMT. This survey might be improved by giving respondents an opportunity to indicate whether the various conditions that are asked about are likely due to other causes. Another way to distintuish CMT-based conditions and non-CMT-based ones might involve asking whether the conditions are chronic or transient.
I’m a 63 YO male and began having a problem in my right foot last summer. I was diagnosed with Charcot Foot. I’m an active guy, no diabetes and no injury to my foot explaining the Charcot.
Neuropathy in BOTH feet followed as 2016 ended. I’m seeing a neurologist at UPENN now and just starting to run tests. I have no history of CMT in my family but some of the things I’ve read sound familiar.
Can the first symptoms appear at my age? Is that common?