Guest guest Posted February 3, 2000 Report Share Posted February 3, 2000 Becca here-- I agree about speaking out, but these docs that think all this stuff doesn't exist in the realm of CMT hurts people like me. When I NEED to have my medical evidence for my SSI claim....this poses a HUGE problem. Seeking disability based on CMT, ONLY what is medically determined to be CMT related is considered valid. This is a mess when you are fighting for SSI. I have a year back claim that has been denied all the way to The Court of Appeals. My only choice and last choice is to sue in federal court! I have had CMT all my life and have a huge medical file, yet have been told CMT is not disabling, and also told, that I have NO neurological deficit. This is blatantly disproven in medical evidence yet they still get away with denying me. However, after a certain point in this SSI process, I was allowed to submit a new claim, separate from the first. The ONLY information I submitted was from my first visit to the Clev. Clinic. I was approved in one month for SSI. This is just nuts!!!! SO... my need for proof is strong. Written medical proof. Cause no one cares what I say!! http://www.onelist.com/subscribe/CMTweightmanagement Re: life threatening > From: KathleenLS@... > > > > > << Keep speaking up on HOW you are affected! We are seeing more and more > references to problems with breathing in some types of CMT. > Considering how many different types there are, and how many separate genes > are causing the defect, it only makes sense that some rarer types that are > not yet classified down to a specific gene will have problems that are not > yet documented and recognized on a broad spectrum. Recognizing that these > rarer problems exist is one of the benefits of using a world-wide forum >> > > I agree that we need to speak up. While it is true that specific problems > some CMTers have may NOT be related to their CMT, in other CMTers they may be > directly related. > We are all different, and we should not be summarily brushed off by > physicians who for some unknown reason have what my husband refers to as " A > Need NOT to Know. " Some of them still deny CMT can cause pain, so I KNOW some > of them are not learning or paying attention to individual differences or > tuning into research. > > Kat > >^.^< > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.