Juvenile dermatomyositis?

About 6 months ago, my daughter had been complaining of her knees hurting when she would run or go up or down stairs. She is 13. I truly thought this was not a big deal, but soon after a strange rash appeared on one of her arms. I made an appointment with her doctor and before the appointment I looked on webmd which gave a few possibilities that I felt I needed to mention to her doctor. Juvenile dermatomyositis was one of them. The doctor quickly dismissed my question stating that any internet search was not worth my time or hers. She was diagnosed with shingles for the rash, and vague syndrome for the knees. Backing up a couple years....when she was 7, I had removed two different tiny lumps which looked like rocks from her face and forehead. Then most recently, one from her back and one from the top of her scalp. I found out that these "calcium deposits" if thats what they are, are also symptoms of this disease in question. So I would like to hear from someone who has advice...

I cannot change doctors until January because of my insurance, do you know of anyone with this disease? Or does anyone have any advice on how to get my daugther evalutated outside of her doctor's office? I discovered that the rash, the sore knees and the calcium deposits are all symptoms of Juvenile dermatomyositis. Thanks for any help. I hope to hear serious answers.

OK- first of all, your websearch is great, but it will help in making a diagnosis only if you use your common sense, so lets see how your daughter's symtpms really stack up to dermatomyositis.

She had pain running up stairs, shes 13. Dermatomyositis is a muscle disease- proximal muscle WEAKNESS is the hallmark, along with tender muscles (usually VERY tender- making use of them impossible) is the rule. Was that the case with her? Or did she just have tenderness below her knees like 30% of teens with Osgood-Schlatter's do? Dermatomyosistis is a chronic disease which has recurring symptoms. If it was "not a big deal", if she was doing daily activities normally except maybe for running up stairs, its wasnt likely to be myositis at all.

Now her rash: the characteristic rash of dermatomysitis, the heliotrope rash is very distinctive: its a purplish, reddish rash that is symmetrical and around the eyes. You mentioned nothing about this. It would be unusual to have dematomyositis without it. It looks nothing like the tender, one sided, blistered appearance of shingles.

Now- those little lumps- you are wondering whether they are Groton's papules, the other most characteristic sign of dermatomyositis? Were they over the back of her hand, elbows or feet? No. Scalp involvement occurs, but its more like psoriasis.

Did she have calcinosis? These are firm, yellow or flesh colored nodules (that is over half a centimeter in size). "Tiny rocks" sounds like hardened sebum, not like calcinosis.

Finally, if you want to put your daughter's symptoms together, she had a few skin lesions over six years and some brief knee pain when running up stairs. You are wondering whether this is a chronic disabling myositis?

If you cant answer the question now, then probably going to doctors wont help either.

a great site for good answers is About.com
Also if she does have a rash try a cold tar based prodcue like Estra.. it clears up very quickly...
Ask for a referal to a Dematomlogist.(they are skin dcotors & know more than most primaries do about skin issuses).. you may be able to get in without the primaries referal too...check out your insurance plan..most alow for a specialist consultation....
The doctors hate WedMd...so never mention you went on line for information...they hate when a patient knows more on a subject than they do...not right,but you have to keep in mind..most of the doctors are of the "ME generation" and think they are the gift to the world...
As for your doctor...sounds like an ego problem...I had a Cardio who didn't like that I know I have a sulfa allergy & the meds had a sulfa base to them....so I stopped the meds.. & it ook a while ,but found a doctor who knows that the body doesnot know how to spell...just reacts to what you put in it...
I grew up with allergies & skin problems..diet can cause alot of problems other than just hives & swollen membranes..
Check to see if allergies run in your family too... stress can also cause ezcama,which is very painful,looks like a big rash and on the extremties...
I wish you well with this problem she has....
Willing to share more if you want to ask other questions....<itsnanceg@yahoo.com> email me if you want to...
take care

The doctor you see is all dependent on you. Your insurance may not cover it, but as long as the doctor you choose to go to is taking new patients, you can pay for the visit to go anywhere. If it could be a life-altering disease, then you should just pay another doctor for a second opinion. Here are some sites that may give you a little more information.

http://www.arthritis.org/conditions/Dise...

http://www.curejm.com/main.htm

http://www.chw.org/display/PPF/DocID/224...

Here's a discussion board where you may be able to talk to other people who either have it or have children who have it:

http://www.myositissupportgroup.org/JDM/...