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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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pm56 | @pm56 | Oct 20 8:55am
In reply to @buttons "Debdeb, I've had dermatomyositis with ILD for over 13 years. There is no cure but it..." + (show)
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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.

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@buttons I’m waiting for a referral to a neurosurgeon, having tested positive for dermatomyositis. Do you mind sharing - how long did it take til you were back up and around? We are still waiting for the genetic testing to come back, and that takes about a month, which puts us into November. I’m worried that if we do the biopsy too close to the holidays I won’t be in good shape for when my kids come home from school, and I don’t get to see my youngest often. Just hoping to get some idea of what to expect as far as recovery. Thank you in advance! Pauline

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kleffew | @kleffew | Oct 21 5:13am
In reply to @pm56 "@buttons I’m waiting for a referral to a neurosurgeon, having tested positive for dermatomyositis. Do you..." + (show)
Profile picture for pm56 @pm56

@buttons I’m waiting for a referral to a neurosurgeon, having tested positive for dermatomyositis. Do you mind sharing - how long did it take til you were back up and around? We are still waiting for the genetic testing to come back, and that takes about a month, which puts us into November. I’m worried that if we do the biopsy too close to the holidays I won’t be in good shape for when my kids come home from school, and I don’t get to see my youngest often. Just hoping to get some idea of what to expect as far as recovery. Thank you in advance! Pauline

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I was diagnosed almost 9 years ago with dermatomyositis the muscle biopsy I didn't have any problems from it I was up and around same day they started me on medication it's been working hopefully it will continue to do so

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pm56 | @pm56 | Oct 21 8:30am
In reply to @kleffew "I was diagnosed almost 9 years ago with dermatomyositis the muscle biopsy I didn't have any..." + (show)
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I was diagnosed almost 9 years ago with dermatomyositis the muscle biopsy I didn't have any problems from it I was up and around same day they started me on medication it's been working hopefully it will continue to do so

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@kleffew oh that’s great to hear! Reddit had me worried lol. It’s been a rough road as I’ve never found a drug that worked (but we didn’t know this was hovering in the background either!). Its sounds like you’ve responded well to your treatment which gives me hope. Thank you for responding! 😊

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kleffew | @kleffew | Oct 22 5:52am
In reply to @pm56 "@kleffew oh that’s great to hear! Reddit had me worried lol. It’s been a rough road..." + (show)
Profile picture for pm56 @pm56

@kleffew oh that’s great to hear! Reddit had me worried lol. It’s been a rough road as I’ve never found a drug that worked (but we didn’t know this was hovering in the background either!). Its sounds like you’ve responded well to your treatment which gives me hope. Thank you for responding! 😊

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You're very welcome and yes my disease hit me out of the blue too

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