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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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Replies to "Debdeb, I've had dermatomyositis with ILD for over 13 years. There is no cure but it..."

@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