Hi Everyone,

I am new to the world of Myotonic Dystrophy as far as “Knowing about the Disease” I am not however new to the effects. I have been dealing with effects since 2003 and have doctor documentation for various problems associated with it (Heart, Lungs, Fatigue, trouble with walking and using my hands can’t do my hair cause I cannot reach and my worse battle has been with the Gastrointestinal problems that could go back as early as 2 years of age when I had 9 feet of small bowel removed due to polyps) I have HORRID stomach attacks since 2003 and unable to work since 2004 that include Severe cramps, Vomiting, Passing out, Light shock (Tremors) and finally bowels break into Diarrhea. Back in January it landed me in the hospital with bowel infection as the doctor put it “They have never seen the type of infection before” I live in a VERY small town in the mtns of North Carolina and Doctor’s here do not understand the nature of this disease so when my brother was diagnosed threw a genetic lab with this and later I tested positive as well Doctors simply have not been helpful (Mine has been very KNOW IT ALL and Uncaring threw this whole process stating “Don’t be Surprised if you DON’T have this) until I went threw the genetic testing facility in Asheville, NC they showed compassion and caring even hugged me before I left. NOW onto my Question (I know I’m long winded) My brother has the muscle disorders along with advanced heart and lung problems with life expectancy not to be more than 2 years at most he’s currently 45. We are pretty sure he will get his SSDI with no problems but what about me? Since 2004 I have been on Food stamps and Medicaid because of being unable to work a job I’d get fired because I have at least 1 bowel attack per week now not to mention the Numbness in my arms and inability to write or use my hands for long periods not to mention standing and walking my ankles and feet swell to the size of coconuts. Should I take my diagnoses to my local SSI office and file for SSI or SSDI? Or should I keep getting documentation before I file a claim? Do I need a lawyer with a confirmed diagnosis of this disease? Or should I file everything on my own?

Thanks in advance for any and all responses,

Connie C