MTCD / UTCD Can't find help

Hello,

I was diagnosed with Multiple Connective Tissue Disease about 4 years ago. I was first treated by a childrens hospital's Connective Tissue Disease department and pain clinic, but once I turned 18 I was booted out of their system.
Since then, I've seen many doctors who have all asked me to explain my diagnosis, or have told me they have never heard of it. I have seen 2 Rheumatologists who said they couldn't do anything for me since my concern was not only my joints, but then one recent rheumatologists told me he thinks I don't have MCTD after all and instead I have Myofascial Pain. (which is meaningless, since its a blanket term for chronic, temporary, or injury caused pain in the muscles and skeleton. so just generalized pain)

I live in the Chicago area and am limited with my ability to attend doctors due to being a full time student, so my process finding doctors has been very slow. I currently don't have a primary care physician, but I'm in the process of finding one who is familiar with MTCD. There's only one Connective Tissue Disease Clinic in the greater Chicago area, which operates only 4 hours once a week. They are no longer taking new patients for the next two years, and don't have a waitlist. I have called all the hospitals in my area, all the specialized clinics for Marfans (in hopes for recommendations for other connective tissue disease places), and all departments I could find that I thought may be useful. I have been treated extremely poorly by many doctors who seem to think that pain in young women is not real or valid. The last doctor I went to told me that the symmetrical growing patches on my body were not related to MTCD (after asking me to explain what it is) and that in fact I must have "had a Corona with lime at the beach yesterday and sunburned myself badly." I am entirely fed up with navigating this system alone and even going to appointments is emotionally difficult at this point but I need to for my health.


I guess my question is, what do I do now?

How were those being treated for MTCD able to find doctors and treatments that were helpful?

Also, for anyone that has a diagnosis of MTCD that they are trying to confirm or get a second opinion on, I would love to hear any advice regarding that process.

If there's anyone from the Chicago area that would have any specific doctor recommendations that would be greatly appreciated.


Thanks for all who are kind enough to share,

Fawn

Post Edited (Fawn P) : 4/3/2018 4:06:07 PM (GMT-6)

Fawn,

I live in Wheaton and have MCTD since 2005. In order for an mctd diagnosis the anti rnp antibody has to show up at some point. Did it for you? Were you treated at Childrens Memorial Hospital?

In regard to mctd specialists there really aren't any. Rheumatologists who treat lupus, myositis, and scleroderma diseases are all familiar with this overlap condition that can include symptoms from any or all of these diseases. I had severe symptoms from lupus and life threatening ones and disabliing ones from polymyositis. Never had (so far) a problem with scleroderma.

It is pretty easy to find rheumys who are very experienced with lupus and they are usually the best bet. Rush, Northwestern, U of Chicago, and Loyola all have good doctors so it is more an issue of what is convenient for you or best for your insurance. As for specific names I can recommend some doctors but the best is to pick your medical center and let them determine who would be the best fit. Going to a major center/medical school is best for complicated diseases like this because over time things can get very complicated. If you want to talk on the phone I would be glad to talk to you. I have a long association with both of the Lupus orgazations here as well as run a support group for myostiis diseases which also has experts in mctd since it almost always includes either polymyositis or dermatomyositis.

Also, going to a major center is best because they will have other specialists that might be needed for both diagnosis and treatment there and referrals willl not be a big issue. Treatment is often similar to either lupus or myositis treatment. Like all autoimmune diseases each case is unique and presentation and response to treatment as well so each of us becomes a one person medical experiment.

Let me know if you want my phone number or email but I am also listed in Wheaton phone book so easy to find.

My personal patient story was recorded by the Myositis Association and is on Youtube. Just search my name in their search bar and you will find it.

Let me know if you have any questions.

Bill

There are plenty of doctors in Chicago capable of treating mctd. It is not really much different from treating lupus or myositis or other similar overlap autoimmune conditions. Contact me and I can help.

Bill

Fawn,

Please reach out to our resident MCTD expert and reference, Bsmie, as I assure you his offer of personal help is sincere and legitimate. Just click on the little blue envelope under his name on the left side of his post and you can send him a direct email. Bill is pretty well-versed with MCTD as he's had a rather severe case himself and he's been active in some recovery groups as well. If anyone here can help you, he's the guy!

Best wishes,