Marilyn Mejorado - firstname.lastname@example.org
I am 47 and live with CMT1A, a myotonic distal form of muscular dystrophy. I was an EMT-I until I could not run to the scene of an accident or lift the stretchers anymore or feel pulses with my fingers. I loved my career and was lost without it. But I had to stop denying I had muscular dystrophy and learn to live with it. I am still stubborn enough to refuse to live the rest of my life wheelchair bound. This brings me to my problem now.
I keep trying to walk w/o afo’s simply because they are hot, stick to my legs, and make me miserable. Well I also keep falling. In 2005 I fell getting into my daughters car and my tail hit the steel, not the intended seat, and I broke my coccyx bone. Then in 2007 just as the pain had started to subside from the first fall I fell walking across the living room on my left knee, flew to Minn. for a seminar, hurt like blue blazes flying back, went to the doc, had x-rays, this time the coccyx was broken and displaced 3 mm. I have had to use my chair more and more.
In 2009 about a month ago my leg gave out on me and I fell getting into bed on my knee, then the next day tried to use the restroom (the handicapped one was filthy so I used a regular toilet) at a grocery store, I forgot reg. toilets are nearly a foot lower than the handicapped ones and when I went to sit there was no toilet, I fell only a foot to a hard landing on the toilet (that foot felt like 5) landing directly on the coccyx, you guessed it, broken again and displaced, not even close to touching the sacrum.
This time is worse than all the rest! The pain is tremendous, left leg numb down the outside, pain radiates to the shoulders and neck. Nothing but laying in bed and pain pills helps.
Ok so I went to a scoliosis center in Greenville NC, next to East Carolina Medical Center, Pitt Memorial, one of the largest teaching hospitals in NC, who ordered an mri and bone density test. The bone density is fine. The PA said I had chronic broken coccyx, that when it mended it only formed fibers to connect to the sacrum, and would break with ANY future falls hard landings etc, and I could not sit for long, there was nothing they could do but give me more drugs, and I had to learn to live with it! I had to insist on trying a steroid injection to see if it would help some, it can’t hurt and I am miserable!
I am so furious! I have MD and am headed closer and closer to a lifetime in a wheelchair, but he said I can’t sit for prolonged periods! Umm DUH? I go to school online for my BS in Criminal Justice computer crimes and am in hopes my presidents honor roll will secure me a position with homeland security. I work from home on the computer, again something I can do from a “seated” position. I advised said PA that I can’t walk far and have to use my wheelchair and ask if I was supposed to lay in bed 24/7? He said “There is nothing we can do”. I retorted then paralyze me and I mean it. I know it sounds crazy but if I am going to be wheelchair bound I would rather not feel this pain!
Your site gave me a glimmer of hope. I have to live with MD, I refuse to “just live with” this and become a drug addict. I am a firm believer in fixing the problem, not masking it with a band aid or more drugs I refuse to take. Please advise me as to a specialist somewhere either here in NC or Virginia. I only have 8 weeks before my next term begins, I have to have help and soon.