Karl Evans
Forum Replies Created
-
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 is all fake, put together by universities. oldkarl
-
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, including 2 Marines. A few years ago I was diagnosed with Cardiac Gelsolin Myeloma, Leukemia and diabetes. Then, last year, a repeat diagnosis of these, plus Limb Girdle Muscular Dystrophy r23 (LGMDr23) with Walker-Warburg , Creutzfeldt, and some other stuff. I worked hard from age 2, played, coached and officiated football, Drove truck, pastored, backpacked around Idaho and Oregon, clung to my faith, now been married to the same woman for 62 1/2 years. I know that some others will not have all the chances I had, but everyone can try just a little harder. Now, any other r23’s or Gelsolin old-timers around? oldkarl
-
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 damaging to my reality than the color of my skin, or the fact that my dilated cardiomyopathy might kill me before this email spreads around the globe. But, I guess every person has a right to be stupid.
-
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 and treatment, which means just get old and die. I guess I am just getting tired of being ignored by people who just want to give you a prescription for aspirin, and a piece of advice: Make peace with the mortician.
-
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 will ever meet another patient with Fukutin and Gelsolin and leukemia and anemia and hypoparathyroidism and all this other stuff. So I try to do everything I can to not rely too much on the docs. I trust OMIM and HPO and the rest of NIH.
-
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 the urine by the kidneys, then pass into the bladder, then out. Now the math part. When I pee into the toilet water, the dead proteins create a foamy mass in and on the water. Sometimes that foam is one (1) centimetre deep. Sometimes 2, but for me, most of the time that foam is 3 centimetres deep across the water in the toilet bowl. The limit for healthy passage of this protein is 0.5 grams per 24 hours. That would make the output less than 0.5. When the foam is 3 cm deep, that means I am putting out around 3 grams of protein every 24 hours, way too much. My kidneys are dying, but the nephrologist says that is true, but I am 80 years old, so what does it matter? But this is my Pee math.
-
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, Leukemias, encephaly, epilepsy, RA, Barrett’s, myelofibrosis, Cardiomyopathy. etc. At birth my doc said I was a “floppy baby” and would not live until my 3rd birthday. Since then i have had 54 cancer and other surgeries, therapies, etc, and have a couple more to undergo soon. Most of these have been done by Mayo, Andersen, Samaritan, Ambry Gen, Alnylam, Samaritan. However, I have been forced to use a certain PCP now, and he refuses to admit any possibility that I have any genetic issues. He says AI is all a fraud, and that the whole thing is a bait and switch thing done by the medical community. He will not even order a whole genome analysis with insurance coverage. Anyway, thanks for the opportunity to note that laziness comes in many forms, even in the medical community.
