Not sure what to ask next

Hi OneTiredMama,

First of all, we all get tired of the strange reactions to our list of symptoms. Or at least we did while we were in the process of being diagnosed.

I can't help you with doctors in Boston, but I believe that the best way to approach a new doctor is to go in prepared. When I was going in to see a new doctor I typed up a sheet that included:

1) a list of all of my doctors and their phone numbers

2) a list of all of my previous diagnoses

3. a list of all of my meds, and finally,

4. a list of every symptom, whether or not I thought it might be related to an AI disease.

And finally, most helpful to the doctor is a copy of your medical file.

A also go to every appointment with a written list of questions.


As doctors rush from patient to patient, they often get impatient listening to someone go on and on about their symptoms and concerns. That's why having it all typed up will make it easier for the doctor.

I'm sorry you're going through this because it can be such a frustrating process. Let us know when you find someone. In the meantime, please join us here. We all need support and we also welcome your input.

Pat

The Boston area has good rheumatologists and you should have no problem finding one.  Ask your doctor and then interview the rheumy to make sure he/she has experience treating AI diseases.  Check with www.lupus.org and www.mda.org.

I have MCTD and have lupus, scleroderma and polymyositis and have been through the mill.  Doctors who are part of a larger clinic or teaching hospital are better for complicated cases like yours.  Doctors in private practice can be fine but they are less likely to see these cases unless they focus on AI diseases.

UCTD can morph into MCTD or something different.  No one can really tell you for sure how it will develop.  The symptoms you describe are common with connective tissue diseases and I had most of them and more.  Plaquinel is often used for mild cases of lupus but more severe cases usually require prednisone and some other immuno suppressants and even IVIG.  There are a variety of treatments and most cases can be controlled but finding the right treatment can be frustrating.

http://emedicine.medscape.com/article/334482-overview

Sorry I cannot give you a specific doctor recommendation but I live in Chicago.  However, my granddaughter has ulcerative colitis and was able to find pedicatric specialists in Boston who have successfully treated her. 

You might also post on www.myositis.org as there are many with UCTD or MCTD and posters from the Boston area.

Good luck and hope you get a diagnosis and effective treatment.

Bill