My lazy primary doctor refuses to test me for anything.  He says I do not look like I have any problems. That is the biggest problem with Samaritan/SS/UHC insurance, that the support and approval of the PCP is required to get any medical treatment. I am dying of LGMD, GSN, MSN, CMD and others, but the PCP just collects money for telling me it… Read more

Hi, Dani and Gail. What you have been through recently is what I have been through for 82, almost 83 years. To shorten the story, I have been dx by reputable labs and clinics across the USA as having several genetic and environmental disorders/ diseases, including LGMDr23, Gelsolin in Myeloma (a cancer), Parkinson’s, Lymphomas,… Read more

Hi, friends.  At birth, my doctor noted that I was a “Floppy Baby”.  Years later, he told me he also mentioned that I probably would not live to see my third birthday. He did not know why, only that I had some kind of “muscle or nerve problem”.  Last month I passed my 82nd birthday, with 4 children, 10 grandchildren and 19 great grandsons,… Read more

Disability is not something that should place a value or grade on a person’s life. It is just like racism, or other such crap. I have dozens of genes and stuff which I have no control over, yet there are many people who refuse to accept me. That is especially true in church, in politics, in romance, in industry. My MD is no more or less… Read more

I agree with the phrase, although it is often ignored or misunderstood.  In the area where I live, Oregon, there are probably not 4 physicians that have any interest in working with someone’s rare disease. If I have a real problem, I call MD Anderson in Houston or New Orleans or Phoenix. Mostly, it means I have to do my own research… Read more

Yeah, that is pretty ordinary, I guess. I have Fukutin, as well as a bunch of other genetic stuff. I have to go to a health system which has very few doctors with any experience. When I see a 16 year old eighth grade grad posing as a MD, I shiver inside. After all, when there are only a few of us in the world, it is pretty unlikely he or she… Read more

I use pee math every day, but for a slightly different reason. First, I have Fukatin Limb Girdle MD, with RyR2 and AGel (GSN) The three of them plus perhaps a couple more have a huge impact on the way the body handles liver-produced protein. The pieces die and become fibrils after a couple hours after creation. Most of them get filtered into… Read more