Update - Dermatomyositis Questions - Myositis Message Board

Sis58 · 02-13-2007, 12:03 AM

A huge thank you to everyone who took the time to reply to my post back in May of 2005. After I posted that, I lost track of this website and didn't get back to it until just recently. I realize as I read it again just how discouraged I was, and the replies were so caring and concerned.

Well, I finally did get a definite diagnosis of DM. I went to a Muscular Dystrophy clinic and the neurologist there told me that 1 out of 3 people with DM will have normal bloodwork throughout the disease. I did have a muscle biopsy which also clinched the diagnosis. I am fortunate - I think my case is fairly mild although I still have a lot of upper leg pain and about a year ago developed foot drop where my toe will suddenly drag as I am walking. I have fallen a couple of times, but nothing terrible. My right foot is weaker than my left, and recently I developed a case of pleurisy that will not clear up. My family dr. wants me to see the neuro again. She is very concerned and so am I that something is going on with my lungs. It's been almost a month with the chest, rib pain when I cough.

Would like to hear from anyone who has lung problems from DM.
Thanks again.

Dharlee · 02-16-2007, 10:57 PM

Hi there. I am glad you got a firm DX, at least you now know what you are fighting. I am still trying to get one myself. My GP thinks I have PM not DM, but all my bloodwork is normal or at least close to it. I went to a neurologist today and he told me that 1) since my blood was normal and 2) because I have pain that I could not possibly have PM. He said no one has pain with PM. !!?? what? I know that is not true. Believe me I dont want this, but I DO want to find out what is wrong with me because something is! I hope I can find a Dr as willing to look for answers as your is. Good luck and prayers,

Dharlee

Sis58 · 02-16-2007, 11:30 PM

Hi Dharlee. Nice to hear from you. I know what you mean - you don't want a disease like PM or DM but you know something is wrong. The neuro I saw that diagnosed me said that 1 out of 3 people with DM will always have normal bloodwork. I imagine it is probably the same for PM. And everything I have read about DM says there usually isn't much pain. NOT TRUE!! The upper leg pain has been really terrible at times. You will be in my prayers. You need a dr. that understands not everyone fits the same pattern. Let me know how it goes. Julie

Glojer · 02-18-2007, 10:11 AM

Hi Dharlee and Sis58, my hubby has DM and he says he had pain in his muscles and especially when he tried to lift his arms or legs. I know by the expression on his face and the hard breathing he did that he had pain when trying to lift his arms and legs. His rhuematologist gave him pain medication right off the bat because he knew it was a painful disease. His bloodwork was normal for several months as he went steadily down hill and finally an ER visit showed a CK level 5 times normal. That had never been elevated in previous tests. No other bloodwork was ever abnormal and he did have a muscle biopsy that showed positive for DM.

Dharlee thanks for the other myositis support site I have found a lot of it helpful also.

Glojer

Dharlee · 02-19-2007, 09:51 PM

Glad the site was helpful! There are some really great people there too.

I had my EMG today and she said as far as she could tell it looked ok too. I thought if pain was any measure I sure went on the right day. You guys take care.

Prayers and hugs,

Dharlee