Living with OPMD

About the New Member Introductions category

#1

New members, start your experience here. Introduce yourself and share your story. Let us welcome you

#2

I remember when my wife was applying for her MA in Social Work, which she has had for sometime. The day she was applying at the University for long distance training. There was a set of stairs, and I was used to those, but this day, I was in agony trying to make my legs work to get up those stairs. It was an strange and uncomfortable feeling. That was over 4 years ago, when I was barely 40. I suffered through multiple EMG’s. Those always felt like (in my mind what it must be like to be tortured with two ends of the wire of a lampshade. I have had approximately 8 of those, they don’t get any better. Then I had a two inch muscle biopsy taken out of my leg without the benefit of any numbing agent. That is what I imagine taking a bullet out of a leg without pain killer must feel like. That was agony. Then I went to the Mayo in MN. I soon discovered it was for low hanging fruit and a spa for the elderly. They base their success on already knowing what is wrong with you. Finally, after incompetent doctor, after incompetent doctor, my primary physician referred me to Baylor in Texas. One of the top genetists in the world did a simple blood draw DNA. I was called in before my appointment time, and told that I had a severe form of OPMD Alleles of 13. I said, “Thank you,” The Doctor was mystified by my response. I told him I had been chasing this thing for years, and now I have an answer. I keep being told that OPMD shouldn’t hurt. The pain is blamed on fibermyalgia. I hate going outside. I use a four wheel walker to go longer distances. People stare, some people are nasty. So, I hate going outside now. My mother has a mild case in addition to autoimmune. My Great Uncle on my mother’s side had it. But, on my mother’s side bother mother and father are Jewish Ancestry, both Sephardic and German. My Father, who does not have the disease is half French have German Jew. There is a relative on my Mother’s side that died in 1909 that supposedly had it, but back in the 1930 census, no one knew what the disease was. We are not practicing Jews, as that was never passed down to further generations. I had to do a lot of digging on my own, as my Grandmother went Atheist during World War II, and destroyed as many records as possible for fear of the Shoah. Those that had not immigrated to the United States when they did would have been part of the Shoah.