I have just been diagnosed with cmt and i am now on a walker . I am scared and hurt and i dont understand why or what is happening to me . Please someone let me know i am okay and that i am not alone
Hi there, I am 52 years old. I have always known I had something wrong and at 11 was officially diagnosed. The first thing that was made clear to me was there wasn’t very much they can do. I was told to live moderately and on the upside people with my condition live a normal life span. The entire reason I had gone to the doctors was because I was having terrible trouble finding shoes and had pain in my feet and knees, I remember wondering how it was a good thing to live a long life if it was going to be filled with pain. And I’ve had my share. In my 20s I just accepted these things as inconvenient, then the back and hip pain kicked in. I had what I can only call a mourning period whenever I gave up a job because I couldn’t physically do it any more. There are so many things I could never do and many others that I sort of did and now can’t. But I tell myself it is what it is. I get mad and I get sad but I continue because every now and then something wonderful happens. I have 2 wonderful children who are now adults and have a child each, and so I live anew through my grandchildren and they remind me the world is wonderouse, make me glad I stuck it out. So now I make a point to acknowledge the joy in my life because I know I will have days when I just can’t. And when of those great moments come I say “See what you would have missed?”
Thank you, i just dont understand everything about this. And the more problem of walking the more scared i get. I also discovered that Dr. Charcot who discovered this also discovered Lou gerighs disease (ALS), so are they the same thing?do i have something fatal? I go to a nuerlogical hospital the 25th but all the stuff running through my head is making me crazy.
There are a few sites that help with information, for your convenience I have copied a link from a Facebook page I am on which has over 7500 members who are either dealing with or have a loved one who is living with CMT. There are a large variety of symptoms with CMT.
Here is a shortcut to an article explains the typical symptoms
http://www.footeducation.com/foot-and-ankle-conditions/charcot-marie-tooth-disease-cmt-foot-deformities/
The Charcot Marie Tooth Association website is very informative
http://www.cmtausa.org/
If you are on Facebook, type in Charcot Marie tooth association and ask to join the group, seeing just how many other people are dealing with this condition might help you feel less isolated, I haven’t personally seen or heard of any association to ALS
Thank you for taking time and settling me down . I have been losing so much sleep over my fears. I have looked up cmt sotes this is the only one i have been answered on. Thank you so much. If you have had surgery did it helo?
Help*
Yes, I’ve had one foot operated on ( at age 27 ) which gave me better balance although it took a long time to heal ( 3 months ) and even longer before it stopped aching, it gave me enough improvement that I didn’t need any other aids to walk. I also had problems with my hips but that isn’t a common problem, I had them replaced. Many people choose not to have operations.
Try not to get ahead of yourself, it sounds like you’ve been getting more symptoms and went to the doctors, it’s good they recognised the condition, there are new discoveries every day, they have discovered the gene that causes CMT, they are working on ways to help. I’ve had to re-invent myself many times, as did my father. He is 75 and still going strong. He uses a walker when he goes out, he mows his own lawn, he still drives a car. He hasn’t had any operations.
One of the many things you’ll discover as you research this condition is that it is very common (about one person in 2500 has CMT) it is all around the world, you are by no means alone in this journey. Many people, like me have generations of people with CMT, there are at least 8 in my family, going back 4 generations, that I know of. I know when I was younger it was hard not to take it personally but as I have gotten older, I have seen many friends suffer from other things which are just as bad and sometimes worse than CMT. So I hope this helps you. I send you love, light and healing.
azspenpal said:
Thank you, i just dont understand everything about this. And the more problem of walking the more scared i get. I also discovered that Dr. Charcot who discovered this also discovered Lou gerighs disease (ALS), so are they the same thing?do i have something fatal? I go to a nuerlogical hospital the 25th but all the stuff running through my head is making me crazy.
I have CMT since I was a child. From what I understand and I am close to 60yrs old, We will not die of this disease. It is not fatal!, It will just make us miserable for the rest of our lives. We just have to live the healthiest and happiest life we can with support like we have now in this group. I have no family, or friends who get what I m going thru'. Sorry to say most people choose not to be around people who have any disease. Unless you have a supportive husband and family it is a lonely disease. Neurologist do not have the answers. They barely know the question. They will run you thru' a battery of tests and maybe one day one of them may tell you the truth. That is.... there is no cure. Then you go home. Lou Gerighs is not the same as CMT.
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