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Muscular Dystrophy Message Board


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Hi Hopalong!
Sorry for the late reply. We've had family in for the Holidays and well...now the cleanup begins. lol
My story starts that as a teen I was diagnosed with scoliosis (curvature of the spine). I wore a brace in middle and high school and although the S curve was still there, outgrew the brace and went along with life. It is only hindsight that we now see the scoliosis was as a result of my MD (limb-girdle) and not the cause of my problems. There are alot of hindsights, such as I always had trouble in gym class being able to keep up with my peers. I couldn't do a sit up for the life of me etc. My mother remembers the doctor always making a remark that my urine was extremely high in protein, but it was never pursued further.
At 34, I became pregnant for the first and only time and had a normal pregnancy with my only problem being high blood pressure. Within 4-6 months after giving normal birth, I began having difficulty walking across a room without falling and had trouble getting up from the sitting position. A close friend also commented that I looked like a duck when I walked. After seeing a photo taken of me, I saw the outswing of my leg that she was referring to. I also remember always grabbing my pant leg or leg to lift it into the car when I was driving. But back then I never paid much attention to that. I also remember one time getting into the tub/shower and dragging my leg across to get it in and my husband commenting that I needed to get looked into as he thought I had MS or something. Whatever I thought and how rude of him.
Anyhoo ~ my problems were worsening and then after a terrible bout with the flu, my right lung collapsed for no apparent reason. It did it again 6 weeks later and they operated to fix it. A year after that the doctors were hoping I had Polymyositis and put me on a very aggresive Prednisone treatment as well as some other drugs for my blood pressure etc. I was on my way to the doctor for a checkup and started experiencing terrible chest pain and couldn't breathe so we stopped at a fire station and EMS took me in from there. I had congestive heart failure and spent some time in the hospital and then got pneumonia again. If it was the Polymyositis, the Predisone would have helped the symptoms, but that was not the case and they then did a muscle biopsy to determine the MD.
So, at this point, the MD has rapidly deteriorated my lung and heart muscle and it seems I get pneumonia at the drop of a hat. I fought like heck, but it was about 2 1/2 years after the initial major symptoms that I became wheelchair dependent. Which changed my life for the better. I am able to live much more independent and do many more things with my power chair than I could before. Last year we went on a trip to DisneyWorld. Well, the day we got there I became ill and was hospitalized for 3 weeks with pneumonia and it wouldn't go away. I lost alot of remaining strength that I had and now cannot walk too much at all. I can take baby tiny steps with the walker, but that's just to get to the commode.
I would like to reiterate what Mark and the group has recommended, that you contact your local MDA. They truly will assist you any way they can. It is a great group of folks. My prayers and best wishes are with you.
kew





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