The Myositis Association, Patient stories, Dermatomyositis

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  • เผยแพร่เมื่อ 3 ธ.ค. 2014
  • Stanley Prather, Odessa, Texas

ความคิดเห็น • 17

  • @DianeMadric
    @DianeMadric 2 หลายเดือนก่อน

    Thanks, I have just about everything you mentioned

  • @phillyjilly9796
    @phillyjilly9796 6 ปีที่แล้ว +4

    Thank for telling your story. 🔆

  • @JESSEHOLLIDAY
    @JESSEHOLLIDAY 3 หลายเดือนก่อน

    I believe my mother's side of my family all had it due to symptoms that lead to there passing and all my health issues from a child up to my age now 40 and my mother was the sickest and just gave birth to me with full blown dermatomyositis

  • @user-wm4je4ct8y
    @user-wm4je4ct8y 5 ปีที่แล้ว +6

    Hi, hope you are still doing well. I've been on my own with severe muscle weakness for over three years now and cannot stand up to brush my teeth or anything else. I am undiagnosed but I think I have this. I can't find any doctors to help me. You are very lucky you found one willing to figure it out.

    • @tunestareasypiano2079
      @tunestareasypiano2079 3 ปีที่แล้ว +2

      How are you doing now...hope all is well

    • @nurseemmiejae317
      @nurseemmiejae317 ปีที่แล้ว

      IVIG THERAPY
      😊I better check this out.

    • @heavenswarriors3244
      @heavenswarriors3244 5 หลายเดือนก่อน

      Pulmonary medicine checked for it, my PCP ignored me, keep searching for a doctor who will listen.

  • @michswags
    @michswags 3 ปีที่แล้ว +2

    THANKYOU!!

  • @bigdlove1414
    @bigdlove1414 3 ปีที่แล้ว +1

    God bless you sir

  • @nurseemmiejae317
    @nurseemmiejae317 ปีที่แล้ว

    😮this is almost EXACTLY me. Gotta get back with Neurologist

  • @lilmamawhat5736
    @lilmamawhat5736 6 ปีที่แล้ว +4

    I have had Dermatomyositis and the only thing that worked for me was the IVIG. My story is a bit different from yours and I've had a whole lot of issues from it. I would love to meet someone who knows what I'm going through. Did you ever have calcium deposits?

    • @cooperfreckles
      @cooperfreckles 4 ปีที่แล้ว +2

      Lil Mama What I was just diagnosed after 15+ years. I have a few calcium deposits in my arm muscle and my leg muscle. I knew I had lumps on my leg and arm but my primary care doctor said they were nothing. So I never mentioned them to my neurologist it rheumatologist. I hope you are doing great with treatment now a year later.

    • @emmamiller6344
      @emmamiller6344 3 ปีที่แล้ว +2

      My sister has it and we’ve been thinking about trying IVIG. How much did it help you?

    • @shrodingerscat8940
      @shrodingerscat8940 3 ปีที่แล้ว +1

      I was diagnosed at 8 years old

    • @shrodingerscat8940
      @shrodingerscat8940 3 ปีที่แล้ว +1

      I had about 24 times ivig and it helped

  • @Boca815
    @Boca815 ปีที่แล้ว +1

    I live in Dallas Texas and I have the same problem
    Can you please tell me what's the name of the Dr
    They do all the test and everything looks good but I know I am positive for ANA and lots of redness on my face and joints pain

    • @venomx4093
      @venomx4093 6 หลายเดือนก่อน

      Have you been diagnosed with Lupus?