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Biomarker for Diffuse Scleroderma skin has been discovered!


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Diagnosis: UCTD per new Rheumatologist


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#1 mando621

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Posted 17 May 2011 - 06:18 PM

Hi everyone.

Well, I am trying to think of this as good news. I got to see a Rheumatologist that actually specializes in scleroderma, he is listed in the medical pages on this site, he also particpates in clinical trials. He checked me and my records over quite well.

He ordered blood tests to test different antibodies and use the old method of testing for ANA.

He didn't really think that anything is too serious, and the note from his office with the blood test results were somewhat brief. He said that the blood tests were all normal, and while I have symptoms of a connective tissue disorder, it is not yet well enough defined to label it with something more than Undifferentiated Connective Tissue Disease. He went on to say that this is a good thing, it could remain this way and stay relatively minor (in the grand scheme of things), it could settle into something, or go into remmission. He is leaving it up to me to decide if I want to come back to follow-up with him or go back to my other rheumatologist.

If this stays the way things are, I guess I can live with this. At least things aren't too bad. I have Raynauds, drier than dry eyes, esophageal dysmotility, GERD, and at times I have fatigue that can get bad. I think I have some skin tightening, but it isn't terribly noticable. My wrists seem to be shrinking.

I've seen other UCTD diagnoses here. I think I am into the scleroderma spectrum, but I don't meet the official criteria. I'm wondering if I will follow-up with anyone except my primary care doctor at this point. Is there any need to do more testing at this point?

I'll probably keep hanging around. I'm trying to spend less time thinking about this and surprisingly it is helping me feel better. I don't think I have psychosymatic symptoms, since I don't think I could make myself stop my esophagus from working. But worrying about things doesn't help me at this point.

Mando.



#2 Joelf

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Posted 18 May 2011 - 01:18 AM

Hi Mando,

It does sound as if that's good news! :)

I know how frustrating it is not to have a clear diagnosis; sadly that seems to be an ongoing problem for a lot of our members with Scleroderma and similar Connective Tissue diseases. Unfortunately, a lot of consultants do adopt the "wait and see how it develops" approach which does tend to make us feel that we're in limbo. I was very fortunate in that I received a diagnosis relatively quickly, but reading the posts of a lot of our other members, I think that not being able to definately diagnose this bizarre disease seems to be the norm rather than the exception.

I'm very glad to hear that you're feeling better and perhaps at this stage you could stay with your primary care doctor with a view to going back to your rheumatologist if things worsen and also monitor the progress of the other symptoms you're experiencing.

Remember that you have lots of friends within our community, so please do keep posting and let us know how you're faring. :emoticons-group-hug:

Jo Frowde
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#3 Amanda Thorpe

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Posted 18 May 2011 - 09:35 AM

Hello Mando

UCTD is a valid diagnosis even if it doesn't feel like one, have a read of this post. You might find it helpful.

Take care.
Amanda Thorpe
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#4 Margaret

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Posted 18 May 2011 - 11:51 AM

Hi Mando ,

I, too, was surprised when my son was diagnosed with (only) UCTD. He had the + ANA, + AntiRNA P 1/111, esophageal dismotility, restrictive lung issues, BUT no Raynaud's, capillary changes, or skin issues at the initial onset. Like Shelley has posted in the past, though, it is still a (complex) medical diagnosis. Are you on medication? They started Gareth on Plaquenil 9 months after the intitial onset and he was feeling a lot better 2-3 months later. Like you, he still has some esophageal dismotility, mild Raynaud's, SICCA, and major fatigue issues.

Take care, Everyone.
Margaret

#5 Shelley Ensz

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Posted 18 May 2011 - 06:39 PM

Hi Mando,

I'm glad you saw the scleroderma expert. Please don't be dissuaded by a diagnosis of UCTD because it is a real diagnosis, in its own right. Just set your mind to follow up with the scleroderma expert once a year, whether you need to or not. Maybe you will get better! Maybe you will get worse. Maybe you'll stay exactly the same. Who knows? But being observed once a year, you'll be able to catch any possible complications very early on and in the meantime you are establishing a good relationship with the doctor, too. Then if things ever do turn worse, you already have your ace in the pocket.

I've said this a thousand times but I'll say it again. It takes an average of six years for women to be diagnosed with scleroderma (three for men with the same symptoms, no comment). It doesn't matter how educated the patient, how fabulous the medical care is or how respected the scleroderma expert is, nor how well documented the symptoms are. In retrospect most could probably look back and say, hey, this coulda/shoulda been diagnosed many years ago. You are pushing the odds in your favor to have the most accurate diagnosis at any given stage by seeing the expert. Hold your head up high. You are doing fine, your doctor is doing great, and some things (like a precise CTD diagnosis) just cannot be forced no matter how hard you try.

This is the time to wrap up all your insurance needs. To save money like there's no tomorrow for if/when disability ever hits. To be sure to enjoy every day to the max because maybe you won't ever feel this good again -- but maybe then again, things will clear up and you'll feel better too, and have a bunch of money saved up and be the insurance queen of Wisconsin!

Just hang in there, okay?

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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The most important thing in the world to know about scleroderma is sclero.org.

#6 debonair susie

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Posted 19 May 2011 - 01:26 PM

Hi mando,

You've been "seated" in this Sclero community for a LONG time and I hope that you remain so.

As has already been mentioned, symptoms can wax and wane along the way...I am so happy that you are faring relatively well, but I believe you know as well as I/we do, that there is great support here whenever you want/need it/us :emoticons-group-hug:

In the meantime, please keep us posted on how you are?
Special Hugs,

Susie Kraft
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#7 punydeb

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Posted 22 May 2011 - 07:51 AM

My official diagnosis is also UCTD, but with confirmed osteoarthritis and "some type of" inflammatory arthritis as well, per x-rays. I have a *lot* of joint damage in my hands. My Raynaud's started when I was young, and the Sicca Syndrome in my 20s. The arthritis started in my late 20s. None of my blood tests--NONE--have ever been positive, which is why I have so much joint damage. My thumbs are destroyed, and I just turned 54. :(

Most rheumatologists refused to treat me for anything but osteoarthritis and my severe osteoporosis, which eventually was diagnosed as secondary (due to kidney disease), so I was sent to an endocrinologist and nephrologist for that. A University Hospital Rheumatology Clinic (UC Denver) and now National Jewish Health have both confirmed the UCTD diagnosis with "superimposed" osteoarthritis and "inflammatory" arthritis. UC Denver called it seronegative rheumatoid arthritis in addition to the UCTD.

Like you, they think I have symptoms of sclerosis, but not enough criteria to make a diagnosis. That's where the "undifferentiated" part comes into play.

With any luck, neither of us will ever progress farther into that criteria. I would dearly love to undo this joint damage in my hands, but that is not to be, of course. They are ugly and nearly useless. :(

Onward...

#8 mando621

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Posted 22 May 2011 - 02:42 PM

Hi everyone,

It is so nice to have a group of people understand what is going on.

I think I'm dealing with things pretty well. I'm frustrated that I have enough signs of scleroderma that I can't take it off the radar yet. I still refuse the lip biopsy because if I'm sero-negative, I don't want to go through a painful procedure to find that the results are inconclusive. Many of them are.

School is out, and this summer I'm going to have to make sure to build up physical endurance for the fall semester when I take on a full load at school. It sometimes is overwhelming just getting through the day.

My hubby and I went out for lunch a few weeks ago, the restaurant was so cold and I had ice tea. By the time we got outside my hands were completely white and I was shivering. Thank goodness I warmed up in the car. Seems I can't get this to repeat in the doctors offices which is a good thing (wouldn't want to freeze everyone).

Have a good week.

Mando. (Lori)