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Saw rhuemy today... dx ... MCTD Please give me your opinion!

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Posted 2/25/2011 7:27 PM (GMT 0)
Well, I had my appt with the Dr today. He said that at this point I have MCTD. He wants to start me on the drug Plaquenil to slow the progression. He said I need an eye exam prior to taking the med and also wants me to see a Lung specialist because  they are more concerned with the possible problems that are not always seen with these diseases. I'm still alittle confused because he said I dont fall in to the critiria for one specific disease... but isnt MCTD a "Disease"?. He also commented that if he diagnoses me with Lupus then my insurance premiums will increase! What???? I dont get that at either. I  have to wear a brace on my forearm for pain and he said eventually the pain should subside. It's been 5 weeks.... When will it ever feel normal again? I go back in 2 months.  Please help me to understand this whole process...

Any feedback would be greatly appreciated!!!!

Hugs,

Rhonda

Posted 2/25/2011 7:44 PM (GMT 0)
I've never heard that about insurance premiums increasing. Seems very very strange, I've been here 6 years and I think I'd have seen it if anyone mentioned it. Odd!

Mixed connective tissue disease is a disease, but it is a collection of connective tissue diseases that is different for everyone and each is not individually diagnosed.

There is no real difference between the two, MCTD and Lupus as far as symptoms go...both include the same sets of symptom.

Plaquenil is a good idea, it takes from 2-6 months to see a difference. He should be checking your inflammation markers (in your blood work) and giving you something for inflammation as needed -- that should help the pain in your arm. For a lot of us we first have a short course of prednisone to get the initial inflammation under control.

Hope you feel better soon,
Posted 2/26/2011 6:22 PM (GMT 0)
i saw your post on my page as well and have been wondering if you know your antiRnp level? was it high or low? mine was pretty low but from what i understand it is never normal to be positive at all and once it is positive you defantily have an auntoimmune DX in the MCTD catergorie.. how your symptoms manafest later and what organs are effected can help to narrow that dx to lupus, scolerderma, raynolds, etc,,,. I think this is where i am at now... wait and see if i flare again and if so what does it effect. Please let me know how the Plaquenil helps as if may be in my future. Not sure about the medical premiums going up but i am sure any life insurence, disability insurence, etc will defantily go up with any chronic disease diagnosis.. maybe that is what your dr meant.
Posted 2/26/2011 11:25 PM (GMT 0)
I was diagnosed with MCTD on Thursday and am terrified. I am 42 years old. The only symptom I really have is raynauds which developed this winter. I started taking levothyroxine for my hypothyroidism last August. My GP gave me nifedical to help with my raynauds. I had a high level of ANA and my titer was 1:1280 with a speckled pattern. The Rheumetologist seemed surprised that I don't have any other symptoms. I have been in a real funk the last few days after overloading myself with information off the internet, which is what terrified me. I have always been a very healthy, very physically fit person and hardly ever had to go to the doctor other than for a yearly checkup. How do I keep my head from spinning and having this feeling of dread all the time - like how long do I have to live? I am trying to be strong for my husband and kids, but it is so hard. I saw some research about plant based diets. Has anyone heard of this?
Posted 2/26/2011 11:26 PM (GMT 0)
Rhonda,

MCTD is a disease and I also have it.  If lupus is complicated then mctd is much more so because it can present symptoms of SLE, polymyositis, and scleroderma and sometimes includes symptoms of other AI diseases.  It is NOT the same as lupus although some patients do present mostly with those symptoms. 

In my case lupus came first, then PM which was by far the worst.  The only problem that might be associated with scleroderma for me is secondary raynauds and that has gotten better over the years.  Treatment is pretty much the same as lupus but will vary depending on how the disease presents and progresses in an individual case.  The marker that defines mctd is a positive lab for anti RNP antibodies in addition to the clinical diagnosis. 

http://emedicine.medscape.com/article/335815-overview

http://www.patient.co.uk/showdoc/40001176/

http://www.medicinenet.com/mixed_connective_tissue_disease/article.htm

http://www.medicinenet.com/script/main/art.asp?articlekey=16955

Overlapping connective tissue diseases are often difficult to diagnose and are highly variable but usually treatable.

Good luck and don't hesitate to ask lots of questions. 

Bill

Posted 2/28/2011 2:34 PM (GMT 0)

Thank you Bill for the post and the links for this diesease. I have read alot of your posts and appreciate the wealth of information that you have shared! I do hope today finds you feeling well and tomorrow's even better!

Thanks again!

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