1. < Autoimmune Diseases

Does anyone have Dermatomyositis? I'm going for my muscle biopsy.

Posted by pinkmk @pinkmk, Jun 20, 2016

Hi. I'm really nervous. They are biopsying my thigh because my right hip is a mess. If you have myositis, you get it. This has been a life-long battle of misunderstood illness with me most recently being ignored four years ago then misdiagnosed with fibromyalgia two years ago. (I was originally diagnosed with fibromyalgia 15+ years ago in another state; long story) After all the tale tell signs of organ failure and gastrointestinal issues at 38 years old , I ended up in a dermatologist's office for a skin biopsy which came up positive for this and now off for a muscle biopsy to confirm.
This is rare and I'm here all alone with no one who understands this unique battle of "the buffet" of autoimmune and chronic pain. Not even my doctors know what it is or what to do and I don't have resources to travel. Trying to stay positive.
Thanks.

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vcornette1 | @vcornette1 | Apr 7, 2017

Thanks for posting, my daughter has RA, Vasculitis, Dermamyocitis and Myopathy NOS we are looking every where for more information

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3 replies
buttons | @buttons | Apr 7, 2017
In reply to @vcornette1 "Thanks for posting, my daughter has RA, Vasculitis, Dermamyocitis and Myopathy NOS we are looking every..." + (show)
@vcornette1

Thanks for posting, my daughter has RA, Vasculitis, Dermamyocitis and Myopathy NOS we are looking every where for more information

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I know this is all a lot to take in especially when a disease is hurting your loved one. Hang in there mom!

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vcornette1 | @vcornette1 | Apr 7, 2017
In reply to @vcornette1 "Thanks for posting, my daughter has RA, Vasculitis, Dermamyocitis and Myopathy NOS we are looking every..." + (show)
@vcornette1

Thanks for posting, my daughter has RA, Vasculitis, Dermamyocitis and Myopathy NOS we are looking every where for more information

Jump to this post

Thank you. She is doing good right now but every test they do they find something else. Now they are thinking Crohns Disease maybe involved.

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vcornette1 | @vcornette1 | Apr 7, 2017
In reply to @vcornette1 "Thanks for posting, my daughter has RA, Vasculitis, Dermamyocitis and Myopathy NOS we are looking every..." + (show)
@vcornette1

Thanks for posting, my daughter has RA, Vasculitis, Dermamyocitis and Myopathy NOS we are looking every where for more information

Jump to this post

Hanging in there

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vcornette1 | @vcornette1 | Apr 7, 2017

My daughter is going through the same thing. Her's started with muscle loss and then a brain bleed, ICU for 10 days that was one year ago, confirmed diagnosis of CNS Vasculitis, Dermamyocitis and Myopathy NOS,not sure of the spelling it may be dermatologist.

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CalcinosisBaby | @kgoodwin9 | May 21, 2017

You are not alone. I first got sick 4/2013 and just now I am starting to function. So far they said I don't have myositis but I have lung issues and severe calcinosis. I'm here for you.

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Jamie Olson | @jamienolson | May 21, 2017

Hello @kgoodwin9! Welcome to Mayo Clinic Connect!

I love that you simply wrote "I'm here for you"- that just says a lot in those 4 simple words, doesn't it? You will fit in nicely in our community. 🙂

What can you share about how to cope with symptoms?

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lil82 | @lil82 | Feb 2, 2020
In reply to @pinkmk "Thanks for tagging people. I actually just got out of surgery. I'm on my way home...." + (show)
@pinkmk

Thanks for tagging people. I actually just got out of surgery. I'm on my way home. In a lot o pain because they did my upper thigh. I'll have results in a week or two.

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I am having a biopsy this month of the thigh, my muscles in the thighs are week, no pain, has anyone experienced this? I raise my thigh to get into the car by hand, to lift the leg is difficult.

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1 reply
Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 3, 2020
In reply to @lil82 "I am having a biopsy this month of the thigh, my muscles in the thighs are..." + (show)
@lil82

I am having a biopsy this month of the thigh, my muscles in the thighs are week, no pain, has anyone experienced this? I raise my thigh to get into the car by hand, to lift the leg is difficult.

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Hi, @lil82, and welcome to Mayo Clinic Connect. That really does sound challenging to have to manually raise your thigh to get your leg into the car. I'd like to ask other members in this discussion if they or a loved one with dermatomyositis have also experienced weakness in the thigh muscles like you describe, such as @kgoodwin9 @pinkmk @johnnyv46 @buttons @vcornette1. @fuzzybadger and @bessie87 also may have some input.

How long have you had this weakness, lil82? Are you having trouble with any other activities?

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1 reply
fuzzybadger | @fuzzybadger | Feb 3, 2020
In reply to @lisalucier "Hi, @lil82, and welcome to Mayo Clinic Connect. That really does sound challenging to have to..." + (show)
@lisalucier

Hi, @lil82, and welcome to Mayo Clinic Connect. That really does sound challenging to have to manually raise your thigh to get your leg into the car. I'd like to ask other members in this discussion if they or a loved one with dermatomyositis have also experienced weakness in the thigh muscles like you describe, such as @kgoodwin9 @pinkmk @johnnyv46 @buttons @vcornette1. @fuzzybadger and @bessie87 also may have some input.

How long have you had this weakness, lil82? Are you having trouble with any other activities?

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That was one of the first clues with my husband's disease process.

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