Results 1 to 10 of 10

Thread: Got room around these parts for a gal with UCTD?

  1. #1
    Join Date
    May 2012
    Location
    Northern Rockies
    Posts
    284
    Thanks
    71
    Thanked 168 Times in 95 Posts

    Default Got room around these parts for a gal with UCTD?

    Hello, all!

    I was recently diagnosed with Undifferentiated Connective Tissue Disease (UCTD) after spending about a year being bounced from one specialist to another. My diagnosis is based on mild neurological symptom (tingling in extremities), mild fatigue, blepharitis (swelling eyelids, basically), urticaria-like skin lesions that last for weeks, musculoskeletal pain, and surprisingly painless oral ulcers. My ANA is negative, but both my C3 and C4 are significantly depressed.

    I take 500mg naproxen twice a day and tramadol as needed for the pain, and I start Plaquenil on Monday, which has me a little nervous.

    I don't feel horrible, but this creeping illness has slowed me down a lot. I used to hike mountains, run, bike, ski, and do very intense yoga. Now, I'm proud of myself if I take my dog on a walk for half an hour. I also have a pretty high-pressure job, so any energy I have tends to be directed toward work. So, my social life is essentially nonexistent, and when you're 31 and single, that's a bit of a problem.

    There don't seem to be any forums for UCTD out there, and no one I know has dealt with anything like this, and lupus seems to be a close analogue to what I'm experiencing, so I hope you all don't mind if I join you here. I'm trying to keep a good attitude, but there are days I just want to yell, "Seriously?! Why me?!" Because I'm doing my best here, but seriously, this isn't exactly what I'd call "fun."

    Anyway, hello!

  2. #2
    Join Date
    May 2012
    Location
    Minnesota
    Posts
    6
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    Speaking from myself I say you are welcomed here and im pretty sure everyone else will welcome you here as well. I actually did some yelling in my truck today, I forced myself to go to the gym even tho I am in a lot of pain today and on my way there I did some venting out load. Feel free to shot me a message anytime

  3. #3
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Derrie,
    Of course you are very welcome here at WHL. Many of us have overlapping autoimmune diseases.
    Mine is MCTD - Mixed Connective Tissue Disease. I have overlaps of Lupus, Sjogren's, RA and Psoriatic Arthritis.
    Make yourself at home here - read some of the old threads that interest you, and feel free to join in on conversations or start new threads to ask questions.
    Welcome to the cyber family.
    Hugs,
    Marla

  4. #4
    Join Date
    Nov 2008
    Location
    hervey bay queensland australia
    Posts
    1,143
    Thanks
    150
    Thanked 206 Times in 176 Posts

    Default

    welcome to whl family.

  5. #5
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,741 Times in 1,211 Posts

    Default

    We call it We Have Lupus but this forum is really for anyone sealing with any autoimmune disease ( or their friends and family). We are glad that you found us.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  6. #6
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,918
    Blog Entries
    1
    Thanks
    1,396
    Thanked 1,617 Times in 1,107 Posts

    Default

    hi,
    and welcome.

    yes you are more than welcome to join us.

    we need each other....
    that is why we exist.
    so feel free to join in.

  7. #7
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Hello Derrie,

    One thing that we strive for here at WHL is to be as inclusive as possible. Being diagnosed with Lupus will never be a membership requirement here. As others have mentioned, autoimmune disorders can overlap each other, and most of us have multiple AI disorders. You'll find quite a few people here with UCTD, so you're in the right place!

    Welcome to WHL,

    Rob

  8. #8
    Join Date
    Apr 2012
    Location
    Pennsylvania
    Posts
    84
    Thanks
    49
    Thanked 16 Times in 13 Posts

    Default

    Welcome Derrie!

    I am newer here as well and I can attest to the fact that all are welcome. I was recently diagnosed with Lupus a little over a month ago. During my first visit with my Rheumatologist he diagnosed me with UCTD. It can be a frustrating diagnosis (it was for me at least, I like to know what's going on because I'm a planner). Fortunately there are a lot of treatments that are appropriate for all autoimmune disorders in general. I am on Plaquenil and I don't think it's anything to be concerned about. There are very few side effects. Most people report having some GI issues within the first weeks of starting it (I have them all the time so I couldn't tell haa), but other than that just make sure to have an eye exam with a specialist so that you can monitor the one side effect of retina detachment (which usually happens after years of taking Plaquenil and can be easily prevented by being proactive).

    I welcome you and I hope that you feel lots of support here.
    Best wishes,

    M

    Lupus, Secondary Raynaud's Phenomenon, Pernio (Chilblains)
    Plaquenil, Amlodipine

  9. #9
    Join Date
    May 2012
    Location
    Northern Rockies
    Posts
    284
    Thanks
    71
    Thanked 168 Times in 95 Posts

    Default

    Thanks, all, for the warm welcome. It is much appreciated.

    M-- I'm actually content with the UCTD diagnosis for now. I know my symptoms don't yet paint the picture of a specific AI disease, but now that my new rheumatologist (the old one was a bit of a dud, unfortunately) believes that there is some sort of AI connective tissue disease afoot, he is willing to start treating me with Plaquenil. So, I'm pretty happy to get treatment after a year of bouncing from doctor to doctor and feeling progressively worse without any sort of treatment. I, too, am a planner and very Type A, but right now, as long as I can get treatment that might help, I can be happy.

    I do wish I knew where the disease was going to go, though. It's weird not knowing whether it will stay relatively mild like it is now, or if it will go away completely (I hear some UCTDs "burn out" after a while and you go back to normal!), or if it will develop to fit the diagnostice criteria for a differentiated CTD like lupus. It's a little freaky not knowing what will happen next.

    Thanks again, everyone, for the welcome!

  10. #10
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,721
    Blog Entries
    9
    Thanks
    1,578
    Thanked 919 Times in 582 Posts

    Default

    Welcome to our family where, as you've been told, any and all AI issues are accepted and welcomed here. I know how scary it can be to not know what course your illness will take and, therefore, not know what to expect. However, I would suggest that you take all of the precautions suggested as if you had a definitive diagnosis. In this way, you may help your dx to remain UCTD and/or help to achieve remission. Nothing is promised with AI diseases and nothing is set in stone. Our primary goal, with our various AI issues, is to prevent flare-ups (worsening of the disease).
    I am glad that you found us and that you decided to join us.

    Peace and Blessings
    Namaste
    Saysusie
    Look For The Good and Praise It!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •