Hi Karate Mom,
sorry I have not responded sooner. I had a deadline that has kept me super busy this past week. From what I understand, UCTD is what they diagnose patients with when there isn't one specific autoimmune that they have narrowed it down to. So if you have overlapping symtpoms of 2 or more diseases, (as I understand it) doctors are more likely to say it is UCTD, or undetermined. If you have the specific positive tests for MCTD, that is different. MCTD is its own specific disease, with overlapping symptoms. I honestly have not done a lot of research, because for some reason this is the one problem I have that I haven't read up on every website possible. Although, you are right, there is not much info for us out there. When my rheum said not to read a lot on it, (I guess to keep me from freaking out? - I have OCD too.) I actually listened to her. Because it seemed more complex than other things. And my rheum said I had a mild case of it.

I am currently back on my plaquenil. I went off it for 2 months. I also went off my chinese herbals for the same timeframe. During those 2 months, my feet started bothering me and my neuropathy got to a point where I began to think it was definitely something other than just fibromyalgia! Before this my rheum and a neuro I went to both said they thought it was fibromyalgia. I am really upset with myself because I think I should have stayed on the plaquenil. I am not sure why exactly I stopped, except other than my wisdom teeth I felt really good. I am not completely convinced that part of my problem wasn't the antibiotics, or the diflucan that I had been taking. I do think my foot problem could be a fungal problem that started or became obviously painful during my diflucan usage. Not sure and no doctor believes that it's possible.

As for being able to continue activities, I have been able to up until this past couple of months. The numbness/coldness has put a damper on things. I love to kayak, but am scared of any drops of cold water touching me, and not sure how to hold my feet in the boat. It seems I either have Raynaud's affecting both feet entirely, or vasculitis? I can see where my feet are turning white. I still do not understand what is going on with me. My neuro appt isn't until Dec. 27. I will say for the past 4 years I have not been able to have a normal sex life. I have had frequent yeast infections, vulvodynia, PAIN. My rheum doesn't think any of that has to do with my meds or MCTD. I think she might be wrong. She has long said my pain is caused by fibro, but she has also said my tingling is caused by fibro too. Not until now has she diagnosed it as neuropathy.

ONE THING to keep in mind... MCTD is not common so I don't believe there are many docs who know a lot about it. If your docs continue to confuse you, maybe look for another eventually? I asked my rheum a question once and mentioned "other MCTD patients" and she said she did not know, as I was her only patient with MCTD. We are in a very populated area, but my first rheum completely misdiagnosed me so I'm not very keen on looking around, especially since I don't have real insurance.

I hope as of now you have more answers. Let me know if you have any questions I can help with. I hope you are feeling well right now. I'm feeling better.