know about or have Myotonic Dystrophy

[fosterchick]

For 20 plus years I have had issues with my muscles. I have finally got a doctor who not only believed me, but has figured it out. I have just been told that I have Myotonic Dystrophy.There is not out on the net about it. I was wondering what is the quality of life with someone that has this.

 

[bargain]

I haven't any direct person information for this but I did just find a site that may be of help www.myotonic.org It has information and you will find discussion groups in the long listing on the left of the page. From one of my conditions I have, I know that each day is a different day and following all my medical protocols is important. Surrounding yourself with positive thoughts and distracting yourself from the discomforts seems to help. I hope this will help you and we'll be keeping you in our thoughts and prayers. PS I'm so glad you know what you have. I have learned, as have you that diagnosis can be a while in the making. Nancy

 

[RHRanch]

There is information out there, but you have to be creative in your seaches. Sometimes info on a particular type of disease is embedded in an "umbrella" site, like the MDA or sites about muscular disease in general. Sometimes general info on those classes of disease can answer your questions about muscle disease and the quality of life and how to use tools to improve your quality of life. I will tell you that doing your physical therapy and staying active can help quite a lot.

 

[rwbwfarm]

I have Myotonic Dystrophy in my family (lost my sister and grandfather). My mother, 2 nieces, and aunt also have it. I had the test and do not - it'd basically like flipping a coin at conception as to whether you will get it or not. If you want, PM me - I've done alot of research to find out as much as possible. For me, it's frustrating to watch the progression & feel like it's a double edged sword for me personally which my genetic counselor said might happen. I do know how it is with the doctors - few know much about it.