The Myositis Association, Patient stories, Dermatomyositis

Поділитися
Вставка
  • Опубліковано 27 сер 2024
  • Stanley Prather, Odessa, Texas

КОМЕНТАРІ • 17

  • @DianeMadric
    @DianeMadric 4 місяці тому

    Thanks, I have just about everything you mentioned

  • @phillyjilly9796
    @phillyjilly9796 6 років тому +4

    Thank for telling your story. 🔆

  • @JESSEHOLLIDAY
    @JESSEHOLLIDAY 5 місяців тому

    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

  • @michswags
    @michswags 4 роки тому +2

    THANKYOU!!

  • @bigdlove1414
    @bigdlove1414 3 роки тому +1

    God bless you sir

  • @user-wm4je4ct8y
    @user-wm4je4ct8y 5 років тому +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 роки тому +2

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

    • @nurseemmiejae317
      @nurseemmiejae317 Рік тому

      IVIG THERAPY
      😊I better check this out.

    • @heavenswarriors3244
      @heavenswarriors3244 7 місяців тому

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

  • @nurseemmiejae317
    @nurseemmiejae317 Рік тому

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

  • @Boca815
    @Boca815 Рік тому +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 8 місяців тому

      Have you been diagnosed with Lupus?

  • @lilmamawhat5736
    @lilmamawhat5736 6 років тому +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 роки тому +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 4 роки тому +2

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

    • @shrodingerscat8940
      @shrodingerscat8940 3 роки тому +1

      I was diagnosed at 8 years old

    • @shrodingerscat8940
      @shrodingerscat8940 3 роки тому +1

      I had about 24 times ivig and it helped