MCTD (Mixed Connective Tissue Disease)

Thanks for the information about sleep! Yes I do have a Rheumatologist I've only seen her twice. The kind of symptoms I have are muscle pain and weakness, extreme stiffness, raynaulds, sicca, photo sensitivity, rash, heart issues but I feel fortunate to know what it is, because for a long time the doctors didn't know what was wrong with me. Thanks again, best wishes!
Regeanna

Does anyone have experience dealing with connective tissue disorders? I'm wondering how you went about getting a diagnosis as I am in constant pain and have been seen by a variety of specialists but they say that since my RA bloodwork is normal that it's not a connective tissues disorder, is that accurate?

Hello @faithandlove, welcome to Mayo Connect. I did a quick search on connective tissue by clicking on the search icon (small magnifying glass at the top of the window) and found the following topic where it may be a great place to ask your question and chat with others.

If you would like to join people talking about mixed connective tissue diseases (MCTD), I invite you to post a message and introduce yourself here:

- MCTD (Mixed Connective Tissue Disease) http://mayocl.in/2oJwj7W

Hoping you get a response soon!

John

I'm wondering how you all went about getting a diagnosis? I am feeling frustrated as I have other medical issues but my RA testing is coming back 'normal' so they don't think that I have a connective tissues disorder, but many doctors have mentioned it. (And I have several symptoms that align with them.) Any suggestions?
Thx.

Hello @faithandlove, (what a lovely username),

I'd like to add my welcome to John's, and encourage you to look at the information he has provided. I hope @snowaries @numby @xanderbam @powerofpositive @cindia1 @livingngrace @zbrooks @regeanna @jewel8888 @kariulrich @luladavis @dogmamat and others will return to share their experiences with you.

Here is some relevant information from Mayo Clinic as well: http://mayocl.in/2nUbmJX, and here are details about Mayo's Connective Tissue Disorder Clinic, which diagnoses and coordinates care for people affected with inherited or genetic forms of connective tissue disease: http://mayocl.in/2nMFAuW

@faithandlove, since this disease involves a combination of disorders, could you tell us a bit more about your symptoms? Are you taking any medications to relieve your pain?

Hi @faithandlove,

I should have done this earlier, but I've moved your message to this group now, so that we can discuss connective tissue disease in one place.

Thank you! Early onset of osteoarthritis, pain all over, venous problems, poor wound healing, joint hypermobility in shoulders, ankles, knees, etc.

I would encourage you to talk to your doctor or get appt at mayo with a genetics counselor. I have Marfans that is a connective tissue disorder that effects body's tissue with your hyper mobility that you have of symptom of Marfans

There are so many connective tissue disorders, and many overlap. Not an easy diagnosis by any means. Have you had a large blood panel done, not just RA?

I have had a full CBC