Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 << But what should I expect to happen in the months or years to come? What next? What happens after the diagnosis? >> Hi April, There is NO way to predict the future with CMT. You should ignore anyone who tries to tell you your future with CMT. Even within a family there are huge variations. The first thing my neuro told me was that I may or may not follow the course my mom's CMT took, so I should not worry about it. Some CMTers were told they would be in a wheelchair in X number of years. Others were told they would never progress. There is no way to predict either. You may plateau for years at a time. You may not. You may not ever be significantly affected. If you can avoid excessive stress it may help. How are you doing now? Very small children can make anyone fatigued, by the way. With your daughter's symptoms I suspect (like you do) that she has CMT, and if so, you would have it also. Yours may be mild. I'm sure the other moms can talk to you about helping your daughter develop her skills as best she can. She may be a candidate for AFOs, I know of other small children who benefit very much from wearing them. You may want to learn meditation for your own sanity. Keep in touch. Kat Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 Today, I started testing for CMT. The doctor says I am showing definite signs and with my family history she is almost certain I have CMT. She's ordered blood tests and an EMG to be sure. I'll also be getting an MRI. I already knew deep down inside the diagnosis before she did my physical examination. But what should I expect to happen in the months or years to come? What next? What happens after the diagnosis? April in Buffalo ----------------------------------------------- FREE! The World's Best Email Address @email.com Reserve your name now at http://www.email.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2000 Report Share Posted May 4, 2000 April in Buffalo, First of all, it is a slow progression. Secondly, it varies from person to person, even in families. Allow yourself to grieve, this is normal. You will morn the normalacies of a life you expected and anticipated. Then ACCEPT, knowing that you are the same person before you knew you had CMT. Carry it with dignity and others will accept it without question. CMT is not YOU. You may have some limitations, but you can still have a wonderful, fulfilling life. Let any adversities of CMT be your teacher. You can learn so much from it. Develop a sense of humor, you will need it. Also, it's OK to have frustrating days, when a positive attitude nor a sense of humor can't be found. I've lived with CMT for a long time and it's not an easy road, but there are a lot harder roads out there. April, I wish you the very best and we are here for you, good days and bad. Keep us posted. in Indy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 In a message dated 8/26/02 10:14:02 PM Central Daylight Time, katy45344@... writes: > katy45344@...katy45344@... Hopefully you have been keeping a journal because Jim (the SSDI attorney that participates in forums for Pancreatitis Association International) strongly suggests that you emphasize the pain and how debilitating it is. The more you can document how it has affected your ability to function (at work, at home, etc) the better. Good luck and take care, Gail West, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 In a message dated 8/26/02 10:14:02 PM Central Daylight Time, katy45344@... writes: > katy45344@...katy45344@... Hopefully you have been keeping a journal because Jim (the SSDI attorney that participates in forums for Pancreatitis Association International) strongly suggests that you emphasize the pain and how debilitating it is. The more you can document how it has affected your ability to function (at work, at home, etc) the better. Good luck and take care, Gail West, Indiana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2002 Report Share Posted August 27, 2002 In a message dated 8/26/02 10:14:02 PM Central Daylight Time, katy45344@... writes: > katy45344@...katy45344@... Hopefully you have been keeping a journal because Jim (the SSDI attorney that participates in forums for Pancreatitis Association International) strongly suggests that you emphasize the pain and how debilitating it is. The more you can document how it has affected your ability to function (at work, at home, etc) the better. Good luck and take care, Gail West, Indiana Quote Link to comment Share on other sites More sharing options...
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