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    • #14871
      Leah Leilani
      Keymaster

      Has a doctor ever made you feel like your symptoms and health concerns are all in your head? Have you exited a doctor’s office feeling like an oddity because your doctor couldn’t explain your symptoms?

      Because my disease is so rare as well as invisible, I’ve had many doctors tell me that I’m faking my illness for attention or that my mom is intentionally making me sick by poisoning me.

    • #15070
      Barry Glaberman
      Participant

      Even the best doctors don’t have the answers to everything. I don’t agree that they should treat us like it is in our head. With MD alone, being that it rare in the scope of diseases, can have a lot of missed cues. I have been fortunate enough to have a neurologist who could recognize my having MD. However, I haven’t had an answer as to what kind of MD. The unfortunate thing is many MDA clinical doctors only specialize in a select kind of MD. Being rare and having over 9,000 different variations, you cannot expect them to know everything. The best you can hope for, is, a doctor to listen and then research your particular MD.

    • #15071
      Pete Barron
      Participant

      Having a very rare disease and adult onset, I went more than 10 years when I knew something was wrong, but was undiagnosed. First I brought my symptoms to my old PCP, who I had been satisfied with previously. He sent me to have some tests and when those came back negative, he sent me for more. After several months of me seeing him and always showing a negative on the tests, he started rolling his eyes snd the scheduler started blowing me off, I looked for another doc. I went through four different docs and got the same treatment, at the start they were very attentive and ordered a variety of tests, but after a while of negative results, they would start the attitude. I must have had the test for MS four times and I was even tested for AIDS. Finally, an old friend of mine from college who lived in a neighboring town, who I still saw socially, agreed to take me on as a patient. He was an internist, which wasn’t a great fit, but he knew me and he knew I wasn’t faking. He looked all through my huge file and ordered a few more tests and told me that we never might find what was wrong, but we could do trial and error on any different therapy we could think of and see what helps and what did not. That process taught me a lot and led me to swimming and water aerobics which I still do. Finally, my older sister, who had most of the same symptoms and we were always comparing notes. Got into a muscular dystrophy specialist neurologist, who sent her samples off to a lab and eventually diagnosed her through genetic testing. I showed my doc the results and he referred me to OHSU medical school two hours away, who ordered the same test and diagnosed me. I was so relieved to have an answer which was usually none fatal and I wasn’t crazy!

    • #15100
      Leah Leilani
      Keymaster

      Barry, I agree that a doctor only has so much knowledge. They can only do what they can within their wheelhouse. But I do think there is an unfortunate amount of physicians who will not admit this and turn the blame towards their patients. However, these horrific circumstances have made me thankful for the wonderful, motivated and go -getter physicians I do have.

    • #15101
      Leah Leilani
      Keymaster

      Pete, I have a similar situation in that all my tests always come back normal even when I had my mitochondrial sequenced to look for genetic markers of my disease. I’m glad you finally found a doctor that diagnosed you and your sister. That was very nice of your friend to take you on as a patient as well. Sometimes, when we’re so close to our breaking point, the right people just show up.

    • #15121
      Ralph Yaniz
      Participant

      My husband, who has LGMD2L, is a tall guy and was still very mobile when he sought an answer for his weakness and falling episodes. A Top Neurologist at a premiere Cicago hospital asked my husband if he thought “his wife was poisoning him”?! He was implying my husband thought he was paranoid. Luckily, after being accepted at the MDA clinic in Chicago, we got answers. Now My husband keeps in touch with Specialists on LGMD @L in Colorado, North Carolina, Chicago and Belgium! bless the internet!

    • #15129
      Gord Wallen
      Participant

      At 17 I was told by my GP that I was lazy and needed to jog for exercise. At 25 I was diagnosed with Becker MD.

       

    • #15147
      Pete Barron
      Participant

      Gord, that’s the worst type of doc that said you were lazy. I hear a lot of comments like that from passers by when I stand up out of my chair or transfer to another seat and I usually end up lecturing then. But from a doc, he should be de-frocked!

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