Last post Thu, Sep 04 2008 6:05 PM by Nightengale. 57 replies.
Betti, you seem to be doing great yourself and leading a fulfilling productive life. I am happy for you!! I am confused about what you said about driving though especially if you have a van that was converted by the state.
I agree we are blessed.
Hello.
I am new to disaboom. I also have MD. I have ocular pharyngeal muscular dystrophy which is an extremely rare form of the disease. It is normally a late life onset form of MD. I started to show symptoms at age 50. I am now legally disabled and collect social security disability. I have droopy eyelids, (have had two surgeries to help this), swallowing problems and very weak legs. This form of MD is not in itself deadly. But it can contribute to death through choking or malnutrition because of the swallowing problems. But the disease does not appear to take any years off of your life, though it may one day put me in a wheelchair. But all in all I consider myself lucky. I have a wonderful understanding wife, two great sons and three grandchildren. Anyway, wanted to say hello to all.
Gary in Washougal Washington.
hi gary, it's nice to meet you and welcome!
Hi Gary,
It sounds like you have a great family and that is what life is all about, the people around you that love you. I consider my self lucky.
Good to meet you.
Ginny
My name is Ari. I am almost 21 years old and new to Disaboom.
As far as I know the Doctors are 100% sure as to what I have. They have diagnosed me with congenital muscular dystrophy with rigid spine syndrome.
They said rigid spine syndrome is pretty rare so it would be nice to meet someone who also has it!
If you want to talk don't hesitate to send me a message! :D
hello my name is Lise and I read your post my husband has the 3 great grand fathers of md he has demtromyositis his causes calcium to form around muscle and joints and this so called Jerry Lewis and the md assoc.don't and won't acknowldge his disease and as far as I am concern Jerry Lewis and his foundation has yet to find a cure any means or forms.
I have been married to my man for 24 years I see the frustration he goes through when he needs something and they either say no or just plain ignore him.
Sorry it just makes me so mad
Lise
Hi everyone! I am new here too! My name is Christine and I have a form of MD called Mitochondrial Myopathy. Looking back on all the past posts, it looks like it just me and Dave for now :-) As we both know, there are many of us out there, they just haven't found their way here to Disaboom. I am an adult affected with this disease and I have 2 boys who are also affected. My oldest, Drew is only symptomatic when he is ill but is relatively healthy day to day and excells in sports and in school. My middle child, Jeremy, is far more affected. He is Mentally handicapped, visually impaired,has a g-tube for feedings, is motor impaired, has a severe seizure disorder and uses a wheelchair for long distances due to fatigue and seizures. I also have a beautiful daughter, Kalianne, who is adopted from Cambodia. Since this disease is Maternally inherited both my boys got the Mitochondrial DNA gene that was carrying the defect inside the mitochondrial transport chain from me. I did know I was affected until my younger son had his muscle biopsy. The doctors at the Cleveland Clinic in OH then looked at me and Drew and knew we were also affected. Well, enough biochemistry for one day ;-0 . I am so glad to have found all of you and I look forward to sharing experiences and time with you.
Christine
my email is pinklilac13@yahoo.com you will get it soon i have cmt also from 3rd grade
please email me back!!!
Dear Jessica, Hi, my name is Sue and I was wondering, if what you have is not actually Md, then what is it actually? I only ask because I have CMT and am just coming around to realize, it could be part of MD. I was told it is a side complication of diabetes, which I do have. But never put the pieces together until this past weekend with MD Telethon. Their poster child for this year is an 8 yr old with CMT! I never realized it could be part of MD, and am now looking for answers there. Any input you can pass along will be greatly appreciated,.....thanks
To pinklilac13, JS53,Little Jen and Anomic, please send along any detailed info on CMT that you may have. I am just beginning to realize I may have MD, in the form of CMT. I am 56 and have been following an orthopedic surgeon for 15 yrs telling me it's a complication of diabetes!! I think I have been looking down the wrong path for answers. ! Someone said this was on the MD website under the fact pages?? I will go there next. I wear braces on both legs, love the beach and pool but just closed another season of not being able to go either place because taking these ugly shoes off and trying to walk on broken glass [that's what it feels like] it not my idea of fun. Lots of pain and neuropathy too. Have had ankle fusion and removal of bone exiting thru skin, hasn't done much to improve. Lost my best job due to medical discrimination, then when I couldn't prove it, lost that case with the Labor Relations Board. In my chair for distance walking, exhaustion and terrible balance. Any input welcome.
hey all,
i dont like using the upper case feature on the computer. my name is giraffeboy and i have CMT MD. Have had it all my life (duh) but was diagnosed at 16, and now collect partial disability, and have become lazy. i have to laugh at myself, everyone else does. i am now 41 in giraffe years, and the dr who gave me a physical for disability siad i have 75% muscle loss. I use a cane for balance, and refuse to be put in a wheelchair. i thank Heavenly Father everyday for the health and strength i have, an pray for continued health and strength. i have been fortunate not to have surgeries due to my MD, but have two life saving surgeries ten days apart but unrelated to each other. My profile tells more about the giraffe. The MDA people have been very helpful to my wife, my kids, and myself. My first visit to clinic was a different story though. email me for more details. I still colect a paycheck for the only job i believe i still can do, motel desk clerk. I am glad to read that i am not alone, and would like to let you know you arent alone either.
giraffeboy
Hi Sue. My disease falls under the MD umbrella but it technically a very rare type of CMT. I've never heard of CMT being related to diabetes. I don't have diabetes so maybe that is why. It doesn't make sense for the two to be related though.
There is a lot of information on CMT online. If you have any questions or just need to talk, feel free to e-mail me.
~ Jessica
Sorry to interupt folks -
CMT is Charcot-Marie-Tooth. It's a hereditary problem sending messages along nerves. It starts in the hands and feet, usually during late childhood, and works up the legs and arms. It's considered under the muscular dystropy umbrella. It isn't related to diabetes except as coincidence if someone happens to have both.
Charcot foot is a problem with the bones of the feet in people with neuropathy in their feet. Diabetes is a major cause of this type of neuropathy. It causes a change in foot shape and foot pain.
I think that the same Dr. Charcot was involved in naming the two of them!
