“I had a part time job in about spring 1972 and always had to walk back and forth since my wife used the car to drive to her work. One fine day at work my back started hurting worse that ever. I got about half way home and all of a sudden I could go no further so I just fell over in the grass in front of a house. A man was walking by and helped me to get home. We had no money for a doctor so I just took a hot bath and then tried to get comfortable. I finally had to go to the Dr. and he, working with several other doctors correctly diagnosed me as having something called Marie Strumpell Syndrome. As I had close to zero range of motion, it really sucked getting to my job and college. When I finally was able to walk with 2 canes, I applied for food stamps. I was denied because I was a college student even while others were accepted. I had been a corpsman in the Navy but I was not able to use the VA hospital or get any other veterans help. Remember this was the ‘70’s. It was not fun standing in all those lines.
The Doctors were so good to us and they barely charged anything for all my visits, meds, injections, x-rays and all they did for us. I couldn’t even dress myself. I got injections in both hip sockets and down my sternum all the time. Woozer it smarted. Still remember this is in the 1970’s.
Somewhere along the way the name was changed from Marie Strumpell to AS. The Doctors promised I would get better then get worse then stay the same. It continues to do that on a regular basis.
Jump ahead 40 years and it is better. I haven’t passed out from pain in a long time. I haven’t had to be carried and I haven’t had to crawl to the bathroom. I’ve had several good jobs and am now retired.
I always wondered why, on the Mayo Clinic list of symptoms for AS, I have all but weight loss.
Thank you so very much,
Colorad0 United States of America