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#1 punydeb

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Posted 28 March 2011 - 08:42 AM

I'm new here, and have been trapped in Undifferentiated Connective Tissue Disease limbo for what seems like forever. None of my tests for autoimmune diseases have ever been positive, though I had my first Raynaud's attack in elementary school. The teacher was so frightened she sent me home. I had childhood kidney disease--cause unknown--and lost a kidney at age 16. I have extremely deformed hands, swan neck pinkies, erosions, positive x-ray diagnosis for both RA and OA in both hands, and now my hips have joined the party. I also have severe osteoporosis and many fractures, compliments of the CKD. I have severe Sicca Syndrome with the Raynaud's--remember, none of my blood tests are positive--and a salivary gland biopsy showed all the cells to diagnose Sjogren's, but not in enough of a quantity to be definitive. I'm five inches shorter than when I graduated from high school, my fingers are swollen, shiny, waxy, permanently curved. I've had ulcers on my left foot twice, and my feet are now permanently almost black in some places.

My internist sent me to see a gastroenterologist about getting a routine colonoscopy, and she took one look at me and said, "My mother had scleroderma, too." I told her I've seen five rheumatologists in three different states. None of them has ever diagnosed me with anything but probable RA, OA, and undifferentiated connective tissue disease.

I told my rheumatologist what she said, and she didn't respond. Is it common for doctors not to commit to this diagnosis unless they have blatantly positive blood work staring them in the face? Other than low complement levels and occasionally high inflammatory markers, high eosinophils (I also have allergies), and my kidney function, my blood work is normal. A lymph node biopsy showed "dermatopathic change," whatever that means.

Are rheumatologists afraid of this diagnosis? And, yes, I also have telangiectasia on my palms and my face. I thought it was from swelling, but now I see it may have another cause.

Has anyone else gone through this runaround with their journey to a diagnosis? I think I deserve to be told the truth. I'm a widow raising a child with a disability alone.

Thanks.

Punydeb

#2 Jeannie McClelland

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Posted 28 March 2011 - 11:26 AM

Hi Deb,

Welcome to the Forum. I'm really sorry you have had such a horrible and severe history of illness. I'm glad you found us, though.

I don't know what to say about the UCTD limbo except that when there are clear symptoms of more than one connective tissue disease at work, that is often the diagnosis. Sometimes you'll see something like scleroderma with RA overlap (or another combination), but when a disease doesn't exist in isolation, the broader diagnosis gives a better basis on which to treat. UCTD is a valid diagnosis but often an unsatisfying one to many patients, mostly because it sounds so nebulous and uncertain, I think, as if the doctor might not really be sure the patient actually has a disease. Just think about trying to explain scleroderma to people, never mind Undifferentiated Connective Tissue Disease. Can you imagine the "Say what?!" looks you'd get? :)

I notice you are in Colorado - have you perhaps had a chance to see the scleroderma specialists at National Jewish Health or University Hospital in Denver? They might leave the diagnosis at UCTD, but you would be seeing people who have a broader scleroderma patient base than most rheumatologists in private practice and a great deal of experience.

I'm getting the impression that you think UCTD is a less serious diagnosis than scleroderma and that something (possibly a bad prognosis) is being kept from you. You really shouldn't feel that way. UCTD is a more inclusive diagnosis and certainly, by your history, plenty to worry about. I'm not a doctor and you haven't said what treatment you are receiving, but I doubt changing the 'label' would change your treatment. Have you talked to your rheumatologist about this issue? I would.

Best wishes,
Jeannie McClelland
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#3 Joelf

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Posted 28 March 2011 - 11:54 AM

Hi Punydeb,

Welcome to these forums!

I'm sorry that you're feeling so worried and uncertain about the diagnosis of UCTD. I know quite a few of our members have had a frustrating time trying to get a definate diagnosis for Scleroderma and other autoimmune diseases like UCTD and I'm sure they will be able to empathise with you. Jeannie has given you some good advice regarding the Scleroderma Centres near you; it is very much better to visit a Sclero specialist as sadly many rheumatologists lack the expertise to deal with these complicated and bizarre diseases such as Sclero and UCTD.

Please do keep posting and let us know how you're faring, won't you?

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#4 Margaret

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Posted 28 March 2011 - 01:42 PM

Hi Punydeb ,

I just wanted to say *hello* and tell you that UCTD is a definitive diagnosis, too, just like Jeannie said.

My own son, at age 18, had all the symptoms of sine Scleroderma almost 5 years ago --- including the + blood work for ANA and Anti-RNA Polymerase 1/111, but still got the diagnosis of UCTD. He also has the symptoms of mild Raynaud's and SICCA. I don't look at his diagnosis of UCTD as being any less serious of a disease than sine Scleroderma. They treated him with Plaquenil and his major symptoms (esophageal dismotility, restrictive lung disease, vocal cords, etc) have lessened.

Keep chiming in here and others will help as much as they can.

Take care, Everyone.
Margaret

#5 CraigR

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Posted 28 March 2011 - 01:57 PM

I agree with the others that you need to see a scleroderma expert. These diseases are so rare that most doctors know little about them, and, additionally every case is different.

It seems very strange that you could have so many symptoms and yet not have positive tests for autoimmune disease. That alone seems to be good reason to find another, more expert opinion.

Good luck,

Craig

#6 punydeb

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Posted 29 March 2011 - 08:12 AM

Thanks for the welcome and the information. I actually drove 100 miles round trip to the Rheumatology Clinic at UC Denver for two years, and they're the ones who gave me the UCTD and "probable RA" diagnosis. I didn't see them listed on your specialist list in Colorado. I don't think National Jewish is on my PPO, but I'll check. I'm on disability now, and my Medicare Advantage Plan--what a puzzle that is!--won't let me go to the University. Isn't that special? A public hospital that won't accept public insurance...?

I lived in Oregon and went to the Rheumatology Clinic at OHSU before coming back to Colorado in 2005 after my husband died. They were fascinated by my Raynaud's, and used to bring in groups of young students to look at me change colors. :blink:

The Fellow I was seeing in the Rheumatology Clinic there went into private practice in Denver, so I went to see her in January. She only seems interested in treating the "probable RA" to prevent further joint damage. I admit, it is severe, and keeping it from getting worse is a good idea. But I have so many other problems--including the kidney disease--these biologics scare me. Plus, my medical insurance is really balking at authorizing the treatments. I'm still waiting to hear if that's going to happen.

I will look at the linked information on UCTD, and also check my PPO to see if I can go to National Jewish.

Thanks.

Punydeb

#7 Sweet

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Posted 29 March 2011 - 01:44 PM

Hi Deb

Let me add my warm welcome! :flowers:
Warm and gentle hugs,

Pamela
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#8 Jeannie McClelland

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Posted 29 March 2011 - 04:33 PM

Hi Deb,

National Jewish is absolutely wonderful at working with patients over financial matters. They really are worth a try. They are also one of the few places I know of that are interested in integrated, 'holistic' care. If you have an issue, they'll address it!

I hope you can find someone that will look at the whole you - it's miserable when they want to concentrate on just one thing~
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#9 punydeb

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Posted 29 March 2011 - 05:00 PM

National Jewish is on my network provider list, so I'm working on getting a referral. My PPO doesn't require one, but they do.

Thanks, all.

PunyDeb

#10 Shelley Ensz

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Posted 30 March 2011 - 09:57 AM

Hi PunyDeb,

I just want to stop by to say welcome to Sclero Forums! I hope you also get a chance to look at our Difficult Diagnosis page. I think you will find great care at the scleroderma center. Here are some warm welcoming hugs, just for you.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

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

#11 punydeb

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Posted 31 March 2011 - 06:27 AM

Thank you. I have been perusing the Difficult Diagnosis page. It looks as if it was written about me.

The Rheumatology Clinic at UC Denver saw their way clear to make the referral to the National Jewish for me, since my insurance will no longer allow me to be seen in their clinic. :emoticons-line-dance: Now I just need an appointment....

Thanks, all.

PunyDeb

#12 Jeannie McClelland

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Posted 31 March 2011 - 08:05 AM

Hi Deb,

That's really good news. They have a couple of people who deal specifically with scleroderma and the rest of their rheumatology department I'd rate as being head and shoulders above those elsewhere. In other words, whoever you get an appointment with will be just fine. They are great about consulting with each other too if they have a symptom or complication they think one of the other specialists might be able to shed light on.

The first appointment might take a while, but once you are in their system, things move along quickly.

Best wishes,
Jeannie McClelland
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#13 susieq40

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Posted 31 March 2011 - 11:19 AM

Deb,

I totally feel your pain. For years and years I was diagnosed with "diseases" I didn't really have, cause they just didn't do enough blood work or whatever to get a definitive answer. I suffered with many ailments, and still do, but until my lungs yelled "HELP" they didn't put everything together. My pulmonologist put it together.

Anyway, we all do what we can...and do what you our doctor's tell us to, because we put our trust in their knowledge. Be your own advocate, and research research research, and if you
have to, find your own doctor...I hope the hospital in Denver has answers for you!!

HUGS HUGS HUGS,
:emoticon-hug:

#14 punydeb

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Posted 24 April 2011 - 04:25 PM

You were so right about my first appointment at National Jewish "taking a while." I was there on Thursday for hours! The custodians were sweeping and closing down the place by the time I finished. Exhausting day. The rheumatologist I saw wanted to see me again in two weeks, but--of course--the next available appointment isn't for a month. At any rate, at one point she looked at me very soberly and said, "You're very sick." ::sigh:: She also asked me if I wanted her to only use the old records, or if I wanted her to start over and make her own diagnosis. I thought for a minute, then asked her what she thought was best. She said she would like to start from scratch. I said, "Go for it." Of course, that's what took so long--labs and x-rays.

Snowing here today. It almost always does on this holiday.

My joints hate it, but we need the moisture.

Thank you again for your encouragement.

PS: What does it mean in my profile about "setting your status?" :)

Thanks.

PunyDeb

#15 Shelley Ensz

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Posted 24 April 2011 - 05:42 PM

Hi Deb,

I'm glad your appointment went so well, and that your new rheumatologist is starting over from scratch. Now you get to play the waiting game for results, but I'm sure you've been there, done that, have the t-shirt as far as that goes.

We have no clue what "setting your status" is the in the profile. I figure it's a setting intended just to drive us absolutely nuts, in the dim chance that the scleroderma doesn't do it first. What would we all set it too anyway -- Sick? Or Sick and Tired of Being Sick? Or, Wish My Sick Would Go On Leave?

Here are some hugs to tide you over until you know more.

:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

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

#16 marsha

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Posted 24 April 2011 - 07:18 PM

Deb,
I too have been going back and forth with a diagnosis and undiagnosis.. I just saw a vasc internist last week who told me all I had was severe raynauds.. I started to cry and said can raynauds make you feel so terrible, achy joints swollen ankles and feet and hands.. she looked up CREST on the computer and looked at me and said I think your second opinion of CREST was correct.. One thing I have learned in the past few days of reading posts here are we are all presenting a little bit different. I keep trying to find the answers but maybe I never will.. I just want to feel "good" again as everyone else here does too. I am sorry you have been through so much, I don't know why it is so difficult for doctors to diagnose us. The only thing I can think of is what The Vasc Internist said, we can run all these tests and find out exactly what you have but in the end there is no cure maybe all doctors or most doctors feel this way anyways.. welcome the people here are AWESOME!!!! Look forward to talking to you more..
Marsha

#17 Jeannie McClelland

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Posted 24 April 2011 - 07:36 PM

Hi Deb,

We must have crossed paths at National Jewish Thursday - I was up in rehab for a couple of hours that afternoon. It would have been nice to have met. :)

Shelley beat me to the admission that none of us have ever figured out what 'setting your status' means. So I'm going to officially set my status as unbelievable gorgeous grandmother! You are the first to know. :lol:
Jeannie McClelland
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#18 punydeb

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Posted 25 April 2011 - 02:36 PM

Jeannie, let's schedule a "date." I will send you a private message--if I can figure out how to do that--so we can do so when I have my next visit. It's May 19th. That's "2 weeks." Yeah, right. :)

Status. I'll go "set mine." :)

Thanks, all!

Status is 1/4" shorter. Urp...

#19 Amanda Thorpe

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Posted 25 April 2011 - 03:14 PM

Hello Deb

Isn't it great to be in good medical hands? Start again...yes please!

I will now admit to the fact that I have no idea either what the status thing is on "your profile" and tried to set something witty once and failed! Just tried again...where does it actually show up?

Take care.
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#20 uknlv18

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Posted 25 April 2011 - 03:51 PM

I think it shows up when someone looks at your profile, but I could be wrong :emoticon-dont-know:

Jean