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Karl Evans

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@oldkarl

A Question: Is there any special clinic or caregiver in the western USA, especially Oregon-Washington who can help me with my LGMDr23? It seems to be not very common, but I have a bunch of variants listed in my genome. Leah, I guess looking in Hawaii should be included, but a trip to Maui might not do much but give me a pleasant Vacation???? oldkarl View
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    Karl Evans replied to the topic Accused of faking/ milking disability in the forum Mental Health and Positivity 5 months, 4 weeks ago

    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…[Read more]

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    Karl Evans replied to the topic Medical Gaslighting in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 7 months, 3 weeks ago

    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,…[Read more]

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    Karl Evans posted an update 10 months, 2 weeks ago

    A Question: Is there any special clinic or caregiver in the western USA, especially Oregon-Washington who can help me with my LGMDr23? It seems to be not very common, but I have a bunch of variants listed in my genome. Leah, I guess looking in Hawaii should be included, but a trip to Maui might not do much but give me a pleasant Vacation???? oldkarl

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    Karl Evans replied to the topic New Members! in the forum Using our forums 10 months, 3 weeks ago

    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, in…[Read more]

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    Karl Evans replied to the topic Disability is Not a Bad Thing in the forum Adults​ ​With​ ​Muscular Dystrophy 1 year, 8 months ago

    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…[Read more]

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    Karl Evans replied to the topic Rare Disease Day 2021 in the forum Muscular Dystrophy Awareness 2 years, 1 month ago

    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…[Read more]

    • Profile picture of Leah Leilani
      Leah Leilani replied 2 years ago

      Karl, I have a rare type of MD that most doctors aren’t familiar with and, unlike Duchenne and Spinal Muscular Atrophy, there is no treatment option. Just managing of symptoms. It does get depressing when a doctor doesn’t believe me, take me seriously or tells me that I’m causing all my symptoms. I’ve suffered a lot of judgement and lack of help…[Read more]

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    Karl Evans replied to the topic Doctors That Provide Irrelevant Advice in the forum Adults​ ​With​ ​Muscular Dystrophy 2 years, 2 months ago

    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…[Read more]

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    Karl Evans and Profile picture of Leah LeilaniLeah Leilani are now friends 2 years, 8 months ago

  • Profile picture of Glendalee Deruiter

    Glendalee Deruiter and Profile picture of Karl EvansKarl Evans are now friends 2 years, 8 months ago

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    Karl Evans replied to the topic Have You Heard of "Pee Math"? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 years, 8 months ago

    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…[Read more]

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    Karl Evans became a registered member 2 years, 8 months ago

    • Profile picture of Danielle "Dani" Liptak
      Danielle "Dani" Liptak replied 2 years, 8 months ago

      Welcome, Karl! My name is Dani Liptak. I am a forum moderator, along with Leah! I was diagnosed with a type of MD called facioscapulohumeral dystrophy at the age of 12. Please feel free to respond to any of the open discussions that we currently have in progress! Let me know if there is a topic that you would like to discuss or if you have any…[Read more]

    • Profile picture of Leah Leilani
      Leah Leilani replied 2 years, 8 months ago
      Hey there Karl,
      My name is Leah and I am a moderator here alongside Dani. I have a rare form of Muscular Dystrophy called Mitochondrial Myopathy that I was diagnosed with at the age of nine through a muscle biopsy.

      Dani and I are excited to have you as a part of the Muscular Dystrophy forum community and look forward to connecting with…

      [Read more]

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