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Need Help MCTD at 17 :)

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Lupus
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Posted 1/21/2011 3:18 AM (GMT 0)
Heya

I'm 17 and have had MCTD for two years although a year and a half of that i wasn't actually diagnosed just tested and sent one way to another.

I have been in relapse for 2 years now with no sign of this letting up, because of the severity of my sypmtoms I no longer can go into school and do the work via email, I've lost friends, weight and confidence but now on top of that my bad health has cause me to loose my job.

I just wanted to ask how do yo acknowledge you have something and work with it? I'm still stuck in that place where it's unfair that i have to take 6tablets a day and use a walking stick. I know there are people worse of but i had such a future ahead of me,

So I guess what I'm asking is how do I reclaim myself? And seperate where I begin and the MCTD ends?

Thanks for listening to my moan...

Lots of love Louise

Posted 1/22/2011 12:16 AM (GMT 0)
Louise,

So sorry you have mctd at such a young age.  I have had it for 6 years and had an extreme case but have recovered substantially and lead an active life again even though I am almost 70.

What are your symptoms; what type of doctor are you seeing; what meds are you taking?

What was your diagnosis?  Classic mctd is lupus, scleroderma and polymyositis but many docs throw in other disease symptoms. 

It is possible to get it under control and also to recover from damage done.  I have personally gone from a hopeless state of being quadriplegic (lost 40 lbs of muscle) and being unable to swallow to leading an active life...skied in MA last week and planning to ski again this week.

There is hope but give us more info.

Bill

Posted 1/22/2011 3:51 AM (GMT 0)
Hey! I'm so sorry to hear about your situation. I'm 15 and was just diagnosed with MCTD also...well probably...haha we don't have a sure diagnoses but it's either that or lupus and Rheumatoid arthritis! I have had it for about the same amount of time as you but was just diagnosed a few months ago. I had to quit dance and stop running and doing all of those things. I have the same questions as Bsime! There is hope though! After being on medication for a while I'm finally starting to feel a little better! I don't really have any great advice for you but just know that you're not alone :)
Posted 1/24/2011 7:05 PM (GMT 0)
Thanks for your reply Bill,
I'm seeing a rheumatologist but I've lost a lot of faith in him, as he seems reluctant to change my medication despite them not working, originally he told me planequil was going to take three months to get into my system after that period of time he said 6 months. Do you think it's worth seeing another Dr or is it better the devil you know?
I'm taking Planequil, Meloxicam, Azathioprine,and fluoxetine, along with regual steriod shots.
I suffer from chronic joint pain that stops me being at all active, fatigue, rashes, weight loss, depression, inflammation, raynauds disease, Restless Leg Syndrome. And am currently only able to get around using a walking stick.
I havent been told what version of MCTD I have, I assume the most common mix but as this is just starting to unfurl there may be more explanations for syptoms.

I hope this helps explain things
Louise.
Posted 1/24/2011 7:14 PM (GMT 0)
Thanks mprrkkp, it means alot to know theres someone out there trying to get through this aswell. Its such a difficult disease and i'm glad to hear your feeling better, and I hope thats it and you stay in remission for ever :) xxx
Louise
Posted 1/25/2011 2:45 AM (GMT 0)
Louise,

I would seek another opinion for treatment.  MCTD or any other AI disease are not easy to treat and if your doctor is not experienced you should try to find one who is.

Bill

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