Though most of you have probably mentioned this in one of your responses or posts, if you have no objections, please tell me again. As you all know, I do not have CMT, and am still learning about it. I can read and read, but I learn more from you.
Thanks a thousand,
SK
I have CMTX1
I have type CMT1a
My family and I have CMT1A
I have CMT1A
I was diagnosed with HMSN 1. Otherwise known as CMT (presumably 1 too)
CMT type 2. Has anyone else been diagnosed late in life? I'm interested in finding out more on type 2. Thank you.
I have CMT type 2. I thought I just had arthritis, weak ankles, and was just lousy at many things (like balance and strength of certain leg muscles), but was diagnosed about 6 months ago at age 68 with CMT 2. The genetic testing did not find a particular gene that was damaged (typical for type 2) so I don't know the subtype.
First I would thank you for your reply. I was about the same age when I was diagnosed. I had years of falls sprained ankles knee injuries and couldn't understand what was wrong. I was finally sent to a neurologist. Had never heard of this disease and still don't know much about it except it makes us clumsy and fatigued and muscle weakness.
I had many falls and sprained ankles from early childhood on. In college I took one entire flight of stairs in one fall (that usually requires more than one!). I got very good at landing and getting back up. But no doctor ever thought that it was anything other that weak ankles and later, arthritis. One orthopedist x-rayed my ankles and knees and found some osteo-arthritis, but never said anything about CMT or neuromuscular problems. One doctor tested me for neuropathy, but only tested for sensory neuropathy (sticking my foot to see if I could feel it) - I didn't have that problem until last year. Apparently CMT is not well known in the medical profession, even though it was first described in the 1890s.
Yes, why is it that doctors haven't heard of it? They obviously don't teach it at med school. I know more about it than my GP! Unless we can get doctors knowing about this we have little chance of any real progress. If anyone here is on facebook, can I request that you like these websites? At least our friends can be aware of it then, and those friends of friends also maybe?
Here is another page which might interest
http://themindunleashed.org/2013/12/34-medical-studies-proving-cannabis-cures-cancer.html
Seems like the CMT1A is the most common here, or perhaps just the most common?
CMT type 2
Hi jnj,
Good to hear from you, thanks for contributing!
CMT 1A
I have type 2. No subtype yet.
John
Though I have cmt type 2 and believe a lot of my symptoms are related. Cant seem to pick up energy from lack of a good nights sleep. Leg cramps and back pain. Saw my rheumatologist today and brought my diagnosis with me and he replied he had never heard of it. In fact when he read Charcot Marie Tooth disease he gave a chuckle. Wont be going back there.
I have type 2. Although not often, I do sometimes have leg cramps so bad they will keep me awake at night.I have osteo-arthritis in my ankles and knees that was probably caused by CMT. The orthopedist that x-rayed and looked at my ankle a couple of decades never gave any indication that there was any neurological cause. My GP at the time checked for sensory neuropathy by poking my feet with a sharp object. He apparently had no knowledge of motor neuropathy.
The lack of awareness of CMT by the medical profession is a serious problem.
Its a shame that when you tell them what you have they look at you as though you made this up.
JohnCary said:
I have type 2. Although not often, I do sometimes have leg cramps so bad they will keep me awake at night.I have osteo-arthritis in my ankles and knees that was probably caused by CMT. The orthopedist that x-rayed and looked at my ankle a couple of decades never gave any indication that there was any neurological cause. My GP at the time checked for sensory neuropathy by poking my feet with a sharp object. He apparently had no knowledge of motor neuropathy.
The lack of awareness of CMT by the medical profession is a serious problem.