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pinkmk
@pinkmk

Posts: 10
Joined: May 22, 2016

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

Posted by @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.

REPLY

Hi @pinkmk, and thanks for sharing your journey with the Autoimmune Diseases group. Feeling nervous is only natural when you’re awaiting a diagnosis, but I hope that members on Connect will be able to provide you with support and guidance. I’m tagging @buttons and @dbdeer, both are members who have dermatomyositis and have recently been discussing their experiences.

@pinkmk, when is your biopsy? Keep us posted on how it goes and next steps following the procedure. Stay positive.

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.

I hope your pain subsides soon, @pinkmk, but glad to hear it went well.

Liked by pinkmk

Thanks love.

I know exactly what you are going through. I went ,for years, back and forth to numerous doctor’s only to discover I had an autoimmune deficiency disease, called, Polymyositis. Had biopsy on right thigh, because I could not get out of bed one morning because I couldn’t feel my right leg. I slid out of the bed to the floor and crawled using my arms to propel myself. The pain was horrible.Then an hour later my leg was fine. My wife dragged me to the doctors, 🙂 ( men we are stupid ) And so started my journey of endless and ” I can’t find anything wrong” dance, that finally ended with a savvy young doctor, who found the problem. So when my polymyositis is not in remission it’s, some exercises and steroids, only temporarily, until it’s back in remission, which could be days or weeks.
No cure, for this, but I can say, that I have been in remission, for 5 years now! (crossing fingers) That’s all I can do.
John

@johnnyv46

I know exactly what you are going through. I went ,for years, back and forth to numerous doctor’s only to discover I had an autoimmune deficiency disease, called, Polymyositis. Had biopsy on right thigh, because I could not get out of bed one morning because I couldn’t feel my right leg. I slid out of the bed to the floor and crawled using my arms to propel myself. The pain was horrible.Then an hour later my leg was fine. My wife dragged me to the doctors, 🙂 ( men we are stupid ) And so started my journey of endless and ” I can’t find anything wrong” dance, that finally ended with a savvy young doctor, who found the problem. So when my polymyositis is not in remission it’s, some exercises and steroids, only temporarily, until it’s back in remission, which could be days or weeks.
No cure, for this, but I can say, that I have been in remission, for 5 years now! (crossing fingers) That’s all I can do.
John

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Wow John! Yes! I’m familiar with poly. It’s very similar to what I tested positive for on my skin and the same process- thigh biopsy…about another week and let’s see what they say.
No one deserves to go through pain. I hope you have more good days than bad. 😀

Using my iPhone
Sheila

@sheilajean

Using my iPhone
Sheila

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Hi @sheilajean, and welcome to this discussion! It looks like your email signature was just pasted into the thread. The group would love to hear why you chose this conversation. Could you tell us a bit about yourself?

What are the symptoms of this?

@debdeb

What are the symptoms of this?

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Debdeb, I’ve had dermatomyositis with ILD for over 13 years. There is no cure but it can be managed. The biopsy does hurt I won’t lie, but it will give the doctor more information. I see a rhumatologist and a pulmonary doc. They are very helpful. There is a Myositis Association on the net that gives a lot of info for us. Also you can request books from them that you can give to your doctor. They also have a convention once a year that gives you a lot of info. They have people from all over, doctors from all over and care giver classes for your caregiver. Do not give up, one day at a time, enjoy life and pray constantly. I hope this helps.

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

@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!

@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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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.

@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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Hanging in there

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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