Quote:
Originally Posted by paty91356
Thank you for your reply, Kitt....it sounds like you have studied CMT for some period of time. I have researched it on the internet, and attended several Conferences on the condition...even traveling a few years ago to Wash., D.C. from California. I am curious if you have encountered any families where 2 members of the family develop it so late in life? Me in my 60s and my daughter in her early 50s?? No symptoms before this time.
As you can see by my Profile, I joined this group in 2007, so I have visited it many times in the past few years, but the "usual" pattern of Peripheral Neuropathy didn't seem to fit our condition, either. so the information being posted was not of much use to me. I DID try several of the suggestions and supplements PNers posted, but nothing was of help to me.
I visited it again 2 days ago (for the first time in a long time) because I was researching Online Forums for my daughter's new Thyroid Cancer problems...I was curious if any of the medications or treatments they are going to be giving her for the Thyroid, are going to cause difficulties for her Neuropathy! NONE of the doctors treating the 2 different conditions/illnesses will think of putting them together, and taking both int consideration for their treatments! We have to manage your own illnesses OURSELF these days! For example..my Urologist would prescribe Cipro or Bactrim for my Urinary Tract Infections, and it took my own research to find out that they TOTALLY messed up my Neuropathy!
|
Yes, I developed symptoms later in life. I also know of another gal whose father was in his 80's before he had symptoms of CMT and diagnosed with it. The gal and her brother finally knew how they inherited it. Before that they were baffled. If her father had died sooner they never would have known.
I've been to many CMT support group meetings. Dr. Michael Shy was at one of them. He is an expert on CMT. He is at Iowa State University, Iowa City, Iowa. I have never seen him as a patient - wish I was closer. But there is nothing you can do about it anyway. Just deal with the symptoms as they come along.
There have been other doctors who know their stuff at these meetings as well. Yes, you have to do your own reputable research and stay up on it. And there are so very many types of it identified so far. Most who have CMT have the more common types. Thank you for your post.