I am so excited to have found this group! I have searched and searched for info on this disease and always come up with the same sites until this one :) I just want to be able to talk to people that are going through the same things I am, offer support and get support when needed.
I haven't been officially diagnosed with CMT yet. I have seen a CMT Specialist and I have all the classic signs ie: high arch, hammer toes, weakening of my lower leg muscles etc... I am going in for the final tests in Oct. I was born with the hammer toes and high arches. My older brothers always thought I was so cool because I could literally bend my big toes backward and touch the top of my foot. I thought I was so special because of the attention. Then as I got older I noticed that other kids didn't have feet like I did and I became embarrassed and would not want to let people see my feet. I would get teased because my shoes would end up looking like elf shoes (because they would permanently bend up at the toe). I just laughed it off.
Anyway I am now 49 years old and in the past few years I have had worsening symptoms. I try to exercise and there are certain things I am just unable to do. I can bike ok as long as not super hilly but walking very far or going up/down stairs is exhausting. Does anyone else feel like when you walk very far, even just through a grocery store that your lower legs are on fire and get super super fatigued? I feel like people think I am just lazy when I have to stop and rest my legs after just walking a short distance. This spring I decided that if I would just tough it out and I thought the more I walked the more stretched out my muscles would get and I could walk for exercise. Boy was I wrong....the pain was so bad and my legs would be so tired that if I even stepped on a pebble it seemed like I would fall because of how tired my legs were.
I think this is enough for my introduction...HAHA! I hope to make some friends on here and share our ups and downs!
We do all have similar stories and do share and understand the things you are experiencing. Glad you found us as well; Very familiar with "if I do it enough, I'll get stronger" but reality is makes me weaker. Been there, done that and still on going! I was 40 before finding out what was plaguing since birth but easily explained away by others and myself. I got to that point of "straw that broke the camel" and body no longer allowed me to compromise or compensate. Once finding out and confirming diagnosis, Then I could really understand so many things about my childhood, young adolescence and adult years.
Continue to learn and share, as it truly is one of the greatest defenses of learning to manage our disease and empowering you with a different kind of strength!
We do all have similar stories and do share and understand the things you are experiencing. Glad you found us as well; Very familiar with "if I do it enough, I'll get stronger" but reality is makes me weaker. Been there, done that and still on going! I was 40 before finding out what was plaguing since birth but easily explained away by others and myself. I got to that point of "straw that broke the camel" and body no longer allowed me to compromise or compensate. Once finding out and confirming diagnosis, Then I could really understand so many things about my childhood, young adolescence and adult years.
Continue to learn and share, as it truly is one of the greatest defenses of learning to manage our disease and empowering you with a different kind of strength!
I''m also glad I just found this group. I'm also really "undiagnosed". My doctor told me she'd give me a referral to a doctor at Vanderbilt University where there is a CMT Clinic. If there isn't anything to be done, why go I through the tests? All it will do is give me a firm name...CMT. Having said that, if there is anything they can do I'd be more than willing to go. I've been to so many doctors over the years and was at the point to just go to bed and cover my head up. BUT, going to bed hurts too!! I'd love to hear from others. Has anyone seen Dr. Li at Vanderbilt?
If you need to get help with SSI or SSD it needs to be official. Any assistance available has to have confirmation. And for children, grandchildren in future who may inherit it will help them to know.
I was first and only in my family diagnosed and did not know until age 40 yrs. At least I know what can or cannot be done and what is causing things to "fall apart". even though can't be fixed I learn all I can to live within my limitations.
Understanding helps so you don't stress over whether you are doing all you can or not. Knowledge empowers. Because some days I'm able to do more and other days not, it helps to know that is CMT nature and not just me "whimping out". PACE is my maintanance plan. Plan or Practice , Activity, Considering, Energy.
As far as Social Security benefits I've been retired for years and draw social security. I just don't think going to a CMT specialist could make much difference. There are not cures. I'm taking Neurontin and Cymbalta and I have a wonderful Internist as my primary doctor. I'm still open to suggestions as I'm just learning as I go. CM said:
Believe it or not it does help to confirm.
If you need to get help with SSI or SSD it needs to be official. Any assistance available has to have confirmation. And for children, grandchildren in future who may inherit it will help them to know.
I was first and only in my family diagnosed and did not know until age 40 yrs. At least I know what can or cannot be done and what is causing things to "fall apart". even though can't be fixed I learn all I can to live within my limitations.
Understanding helps so you don't stress over whether you are doing all you can or not. Knowledge empowers. Because some days I'm able to do more and other days not, it helps to know that is CMT nature and not just me "whimping out". PACE is my maintanance plan. Plan or Practice , Activity, Considering, Energy.