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

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.

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

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. 😀

<br><br>Using my iPhone<br>Sheila

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, 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.