Thursday, November 29, 2007

More Info on Undifferentiated Connective Tissue Disease

Many thanks to SharonMV, who left a comment on my Slight Nuance post recently, giving me the correct name of my nonspecific, working diagnosis as Undifferentiated Connective Tissue Disease.

I found some great information on the Web about it, rather than reading about the various types of named connective tissue diseases, such as lupus, rheumatoid arthritis, etc.

I learned some very interesting things:
  • If you go more than 12 months with UCTD without being diagnosed with a more specific disease, such as lupus, you are likely to have remained in the more generic UCTD diagnosis 10 years later.
  • You're less likely to suffer organ damage with UCTD versus lupus.
  • Treatment seems very similar to lupus, if not identical, but with less frequency of serious developments.
  • It's possible to go into permanent remission with UCTD, but I haven't seen anywhere that offers that possibility to lupus patients.

My source for most of this is eMedicine.com, more specifically here.

National Jewish Hospital, which has been highly recommended to me by my Denver relatives, also has some good info, although it's not as detailed as the eMedicine stuff.

To SharonMV: Thanks also for telling me about CVID. I plan to ask my internist about that when I see her next week. I have had my IGG levels tested, sort of. Initially, my IGM was moderately positive while the IGA was negative. When I was tested again a month or so later, my IGM figures had gone up slightly but were still in the "moderately positive" category. However, the IGA had turned positive and was now in the "moderately positive" category. I haven't seen anything with the IGG or IGG subclasses mentioned, which doesn't entirely rule out that I have had it tested but I do have copies of most of the bloodwork done on me and it's not in there at all. Anyway, I'd love to hear more about your experience; if you're blogging somewhere, please post a link for me! If not, you can find my email address on my profile page, and I'd very much like to hear from you.

2 comments:

Anonymous said...

Hi. I was diagnosed with MCTD and polymyositis in 2005, after suffering terribly for over a year. I saw tons of specialists who felt it was in my head. WRONG!
I was bedridden for quite some time, unable to feed myself or walk. They tried IVIG for a year, until I starting convulsing. With no where else to go, my docs took a risk and gave me Rituxan. My last treatment was in July 07, and I am in full remission. Don't get me wrong...things can change tomorrow. But I live each day to the fullest. I was a business/power exec before the diagnosis, and since I have been doing better, I am pursuing my doctoral degree in metaphysics and have recently become an ordained minister. I hope to minister people with chronic illnesses and offer support to their families. My blog has been a godsend to me and others around the world. I am glad we have connected.--Rev. Bev

Beverly L. Boyarsky said...

Hi. I was diagnosed with MCTD and polymyositis in 2005, after suffering terribly for over a year. I saw tons of specialists who felt it was in my head. WRONG!
I was bedridden for quite some time, unable to feed myself or walk. They tried IVIG for a year, until I starting convulsing. With no where else to go, my docs took a risk and gave me Rituxan. My last treatment was in July 07, and I am in full remission. Don't get me wrong...things can change tomorrow. But I live each day to the fullest. I was a business/power exec before the diagnosis, and since I have been doing better, I am pursuing my doctoral degree in metaphysics and have recently become an ordained minister. I hope to minister people with chronic illnesses and offer support to their families. My blog has been a godsend to me and others around the world. I am glad we have connected.--Rev. Bev