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DERMATOMYOSITIS TEENS

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Posted 6/19/2013 6:09 PM (GMT 0)
Hey All,
I've recently been diagnosed with the Dermatomyositis and being diagnosed at 17 is very rare with this condition as it is usually most common in young children or adults in their later years. Therefore, I've found it very hard to find people of my age with the condition that I can relate to.
I was wondering whether there were any other teens out there with Dermatomyositis and whether we could share our experiences.
Thanks!
x
Posted 6/19/2013 7:05 PM (GMT 0)
Hum. Just learned something, I didn't know about Dermatomyositis and that it is linked to connective tissue or auto-immune disease. I don't know if others reading this might have issues like yours -- I do know we don't have many teens right now.

You are welcome to stay here and talk about what's going on and we will support you as much as we can.
Posted 6/19/2013 7:09 PM (GMT 0)
That's a shame. Thanks for the reply!
Posted 6/20/2013 2:45 AM (GMT 0)
Actually, DM is fairly common in young adults although older folks get it as well.  I have polymyositis but lead a local support group for myositis diseases in the Chicago area and am quite familiar with the disease.  I suggest that you post on the following sites and you will find many with DM who can answer your questions.

www.myositis.org

A closed group for DM and PM on Facebook.  Just request to join and you will be admitted...it is open to anyone with PM or DM.

https://www.facebook.com/groups/201461863232077/

Let me know if you have any specific questions. 

Bill

Posted 7/17/2014 6:51 PM (GMT 0)
Hi,
I was diagnosed with Dermatomyositis recently when I was 18, so I know how you feel I don't know if you still read this forum, but message me if you have any questions and I'll try to answer them the best that I can.
Posted 7/17/2014 8:30 PM (GMT 0)
Hey dermatomyositisteen look into the following:
1- detox and/or detox from heavy metals, one word for you chelation.
2- heal your G.I track, 70 to 80 % of the immune system is there. Another word for you, "silver aloe protocol", ok more than just a word.
3- immune modulation(balancing) with beta glucans, specially beta glucans from bake's yeast, and medicinal mushrooms.
4- Vitamin D3, should be from 80 to 90, not less than that.
5- Probiotics
6- plant sterols for immune balancing.
7- check that you have not adrenal issues.

So much to do, and much better than medications. Medications suppress the immune system, no good, no good, no good. Just saying.
Posted 7/17/2014 9:39 PM (GMT 0)
Entero,

BAD, Bad advice. If you knew anything about myositis diseases you would know these suggestions would NOT control DM. DM cases range from very mild with skin only symptoms or very serious with significant disability and permanent muscle loss as well as possible lung, swallowing, cancer, and heart complications. Dysphagia is common in severe cases due to muscle damage.

Immune suppressants do have many bad side effects but not everyone has those and there are newer treatments that are biologics or IVIG in addition to traditional ones: prednisone, Imuran, methotrexate,etc.

Some of your suggestions are good for general health and well being but I don't want to argue that. Myositis (except for inclusion body myositis) requires treatment in the vast majority of cases to prevent permanent damage and serious complications. The sooner you get the immune system under control the better the patient's chances for going into remission and avoiding permanent muscle damage or organ involvement.

Not seeing a rheumatologist or neurologist and not being treated is definitely playing with fire. I know 00s of DM patients personally and most do get their diseases under control but some do not.

Earlier I suggested that the poster go to the TMA site where she will find patients with DM, PM and IBM who can give her advice based on their experiences with myositis. I hope she/he has done that because there are many great and knowledgeable people on that site and many resources to study. TMA also has a large medical advisory board with doctors and researchers from all over the world. MDA is another good resource and DM and all myositis diseases are considered in the muscular dystrophy family.

Bill
Support group leader for TMA
Posted 7/17/2014 10:35 PM (GMT 0)
Quote"BAD, Bad advice. If you knew anything about myositis diseases you would know these suggestions would NOT control DM..."

Theses believes are the reason people don't HEAL, yes i said HEAL. My suggestion was not aim to " control", it was aim to heal. Yes you are right, i know nothing about myositis diseases but i know about autoimmune diseases, and this is one.

I'd never suggest not seeing a rheumatologist, of course at first one might have to use medication IF IT IS NEED IT but to HEAL, one needs a series of tests that are only done by alternative integrative doctors, rheumatologist know nothing about those special type of tests.

Qoute"...Immune suppressants do have many bad side effects but not everyone has those..." Again if it is a emergency, or if they are need it, of course but, immuno suppressants are not a long term answer, they are PART OF THE PROBLEM.

Quote"Not seeing a rheumatologist or neurologist and not being treated is definitely playing with fire". I never did nor would i ever suggest that.
Posted 7/17/2014 11:04 PM (GMT 0)
Arguments are not tolerated at this website. This thread is hereby locked to avoid further trends toward downright argument.

Both views have been stated.
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