MCTD Support Group

Mixed connective tissue disease (MCTD) or Sharp's syndrome is a human autoimmune disease in which the immune system attacks the body. MCTD combines features of polymyositis, systemic lupus erythematosus, and systemic scleroderma and is thus considered an overlap syndrome. MCTD commonly causes joint pain/swelling, Raynaud phenomenon, muscle inflammation, and scarring of...

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klwfroggy 10/13/2011

So, I saw my new rheumy yesterday. It actually went really well. I told her about the problems I was having with my old one, and she seemed to understand where I was coming from. I asked her about the troubles I have been having with my ears and told her about my old rheumy saying that mctd doesn't effect the ears. She agreed with me that ears are made of connective tissue so they could very easily be attacked. She also confirmed that I do not have an allergy. She wants to run a bunch of blood tests of course, but some of them are new ones that I haven't had before. She also wants me to have a pulmonary function test next month after the labs come back. So, all in all, this looks promising...I am hopeful!
-Kate

Havana 10/13/2011

That's great news, Kate. It makes all the difference to have a doctor who makes you feel heard!
Sharon

deleted_user 10/13/2011

I'll be going to a new rheumy next week too! My current one is retiring. He was in the "Top Docs" book by Castle Connelly.... now that he's retiring, I want to see an even better one, I live near NYC where the #2 rheumatology hospital in the country is, http://health.usnews.com/top-doctors - based on Castle Connolly (http://www.castleconnolly.com/doctors/index.cfm).
Turns out my current, retiring rheumy thinks he can get me in. We'll see. Need to remind him.

I also had a Pulmonary Function test today. The nurse/tech (not sure of her title) that administered the test was so ... cool! She was like a cheerleader, telling me when to do what. There were many tests altogether, some repeated 3 times.

Honestly I'm scared of having so much organ involvement (kidneys aren't perfect, lungs aren't, heart was OK two years ago, today I also had an echocardiogram). It's already known I have Interstitial Lung Disease, not severe, because of my Jo-1 Antibodies (that sometimes come with polymyositis - or dermatomyositis) but now I also have scleroderma (numbers are low) and I have definitely have had more trouble breathing than usual ...

Good luck with your new rheumy!!

klwfroggy 10/14/2011

Thanks everyone. I am really hopeful with this one! Carol, good luck with all your tests and with your new rheumy!
-Kate

deleted_user 10/14/2011

So glad you found a new doctor who seems to be a better match!
Our ears are made of elastic cartilage . . . of course they could be affected!!!

deleted_user 10/15/2011

Kate
So happy for you. I hope all your coming tests go ok
My nuro doc. Wants me to see a RA doc.
I have now the referals.
Just try calling but things got into the way. I'll try Monday again.

I went to one a couple years ago they did blood work up didn't find RA back then.
I have something going on now? I hope Kate I find and RA doc as nice as yours.

Carol. You make me wish as well I live in NYC. Sounds great I'm just jealous, lol
I too hope it goes well for you too.

I was in hospital a couple weekends back, just chest paints.
Heart doc kept me over. Nuro doc did more mri's. Like really? Told me what I knew cyst in brain growing. Causing most of left side darkness and falling down.
With this and Polyneuropathy. What else.
Well then I reason many here with even worse and more then me going on, I just say I'm lucky.

God bless. You all. Really everything you face. Teaches me how to live.

Love you are.

Beez

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