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Diagnosed UCTD with Capillary Drop Outs


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#1 Jalee85

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Posted 14 July 2011 - 12:47 PM

Hi,

My name is Jenny, I am 25 years old and was diagnosed with Undifferentiated Connective Tissue Disease with the early onset of lupus and sclerodermic changes including nail fold capillary drop outs. Everything I have read points to drop outs meaning that you are most likely to develop Progressive Systemic Sclerosis. But under Limited Sclero it just says "usually does not have drop outs". I was just wondering what others have experienced; if they did have drop outs what type of scleroderma have you been diagnosed with?

I just started with my Raynaud's symptoms in January; I feel like I am on an egg timer. I have no skin hardening as of yet, but the waiting is killing me in itself.

Thanks for any help in advance!

Jalee

#2 Joelf

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Posted 14 July 2011 - 01:57 PM

Hi Jenny,

Welcome to these friendly and informative forums!

I'm sorry to hear that you've been diagnosed with UCTD (Undifferentiated Connective Tissue Disease) and I can understand how worried and overwhelmed you feel. To give you a little more information, I've included a link to Nailfold Capillaroscopy which can disclose certain abnormalities of the small blood vessels, and specific findings can be very useful in diagnosing, classifying and staging forms of systemic scleroderma.

I have limited Systemic Sclero and one of the tests I had was a nailfold capillaroscopy. It involved the doctor placing a drop of oil on my cuticles and then placing my hand in this rather natty little machine, which showed up the distortion in the blood vessels in my fingertips. Like you, I also suffer with Raynaud's.

However, the good news is that you've found our forums and joined our community, and we have other members who also have UCTD and I'm sure they will be along to offer you advice and support. Do please keep posting and here is a welcoming :emoticons-group-hug: for you. (I'm the red one!)


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#3 Jeannie McClelland

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Posted 14 July 2011 - 03:29 PM

Hi Jenny, welcome to the Forums.

All the contradictory info you find about scleroderma gets pretty confusing, such as the capillary drop-out suggesting you are most likely to develop progressive systemic sclerosis (or not, depending on the authority). The important thing to remember is that nothing is ever certain with scleroderma. For instance: skin thickening is one of those 'might never happen' symptoms - there is a form of scleroderma called systemic sclerosis sine scleroderma. That's what I've got and nearly 5 years down the line I have no skin thickening at all.

When we're first diagnosed, it is natural to read (and believe) everything in an attempt to pin down what is going to happen to us. Although I was a world-class worrier, I've learned that fretting about something that hasn't and might not happen is like paying interest on a house you don't own. Don't stress and do keep posting!

Warm hugs and best wishes,
Jeannie McClelland
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#4 debonair susie

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Posted 15 July 2011 - 10:44 AM

Hi Jenny,

As Jeannie pointed out, it really IS difficult for exact diagnoses, when there are so many "things" that can enter into the equation. Anytime we have possible overlapping of chronic illnesses, it can truly complicate matters, when trying to hone in on one particular disease.

As a result, length of time for diagnosis can take awhile, as demonstrated by many of us.
For me, it took 4 years and many diagnostic tests before I was diagnosed with limited Scleroderma. Even now, as Jeannie mentioned, it depends on who one sees, what you will have, as my doctors teeter between Limited and Diffuse, depending on how they interpret my symptoms.
Since my initial diagnosis, more have been added, but withthat, the treatment has been very good. I believe in treatment of symptoms, in order to maintain the optimum of our conditions and live as well as we are able.

It's just so important to become empowered with knowledge in order to advocate for yourself.

I'm glad you are here and hope you are able to get the answers you are looking for.
Special Hugs,

Susie Kraft
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#5 Amanda Thorpe

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Posted 16 July 2011 - 06:03 PM

Hello Jenny

Welcome to the forums and sorry to be late on the welcome!

Egg timer eh? Good analogy, unfortunately waiting to see what happens next is part of having a chronic disease with a multitude of symptoms. Ever see the film Forrest Gump? In it Gump proclaims "life is like a box of chocolates, you never know what you're gonna get" well replace life with scleroderma! Of course that can also mean you may never get much of anything! :emoticons-yes:

Take care and keep posting.
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#6 Sweet

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Posted 20 July 2011 - 11:15 AM

Hi Jenny!

Let me add a warm welcome to you. Jo gave you a couple of excellent links. I hope you find them helpful.
:flowers:
Warm and gentle hugs,

Pamela
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#7 Jalee85

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Posted 29 July 2011 - 05:44 PM

Wow, thank you for the warm welcome as I am very late in responding I have been so busy and I had forgotten I even posted on here The only reason why I found it was because I found a link to that thread when I was doing a search on the internet. :VeryHappy:

I am still living my life. I just would like to know what may possibly happen and what is out of the realm of possibility at least a good percentage. I just was told I have bad migraines and started meds however everything says when you have Raynaud's you shouldn't take these meds. So yet another contradiction. I will be sure to post more often now that I have found the group once again.

Jalee

#8 judyt

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Posted 29 July 2011 - 11:42 PM

Hi Jenny,

I just thought I would add my twopence worth to this thread. I have had Raynauds and GERD and Migraines since 1966 - 45years no less. I didn't get a diagnosis until 2003 but that didn't change anything except to tell me that I am NOT the hypochondriac I thought I was. My Raynauds has more or less disappeared along with the Migraines since I was put onto Amlodipine in 2003, I have no skin involvement that I can see, some doctors say I have fat fingers but I think they are stretching it a bit - when I see what others have to put up with my fingers are fine. I did have crazy cuticles and capillary drop-outs but that has all but disappeared too.

I have an official diagnosis of CREST and therefore Limited Systemic Sclero and what I do have trouble with still is internal involvement. No heart or lungs so far but my digestive tract is a mess. However, the medications I am on all seem to help and I even seem to be on the track of some relief for the faecal incontinence which bugs me most so things are looking not so bad after all.

Best wishes to you, don't worry too much about what might happen, because it might not either.

JudyT

#9 Jalee85

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Posted 01 August 2011 - 05:18 AM

Thanks for telling me your story.

I am 25 years old and my disease seemed to hit me like a ton of bricks. They say it is more likely for dropouts to be progressive than the limited. I hope this is true in my case as well. My main concern is that I want to be a mother and if I want to be a mother I want to know what kind of life will I be providing for my child? So if I thought I may develop that it might make me think twice and see how the disease progresses before I would try and have a child. I am getting married September of 2012 so maybe I'll have a better idea by then.

Jalee

#10 Chopper

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Posted 01 August 2011 - 01:02 PM

Hi Jalee85,

Congratulations on getting married! How exciting! If and when you decide to have a baby I hope everything goes great for you. Since you're thinking about it now, you are obviously a person who wants to be prepared, so when the time comes hopefully your doctor will give you good advice and help you be prepared. Here's a link to info on pregnancy and systemic scleroderma...

Chopper :VeryHappy:
Limited Scleroderma, Hashimotos Thyroiditis, Celiac, Gastroparesis, GERD, and Gastritis.

#11 Amanda Thorpe

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Posted 01 August 2011 - 02:18 PM

Hello Jenny

Congrats on the upcoming nuptials! I hope by the time it's time to walk down the isle you have a better idea about whether to have babies or not. Strange thing to have to consider when it comes to having children eh? Not on most people's pro/con lists!

Take care.
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#12 Jalee85

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Posted 12 August 2011 - 08:43 PM

No kidding huh? I just know I'm not undifferentiated. They need to put some studies out with more people who have had drop outs and are not Progressive. I think of all the replies I did get only one person said they they had dropouts and were just local.

Jalee

#13 Shelley Ensz

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Posted 12 August 2011 - 09:19 PM

Hi Jenny,

I'd venture to say that most of us aren't aware of whether or not we have dropouts, regardless of what type of scleroderma, because most doctors simply don't bother to do the test, at least in the U.S. Here's the link to Nailfold Capillaroscopy for Secondary Raynaud's.

I may be wrong (I often am!) but I don't think it's written in stone that everyone with dropouts will inevitably develop full blown scleroderma or other connective tissue disease. In fact, years ago scleroderma was always called "progressive systemic sclerosis" because they thought it always progressed, quickly and fatally. Then they realized that they were only diagnosing the very worst cases at the very end, and once they started diagnosing scleroderma earlier, and treating it better, they discovered that there is a huge spectrum of disease and that it is absolutely not always progressive. In fact, if often improves -- and sometimes, even goes away completely! -- even without any treatment at all.

Therefore, since systemic sclerosis itself isn't always progressive, there also wouldn't be any reason to believe that nailfold capillary drop-outs (a single indicator of possible disease) would always be progressive. It would mean they are a possible indication, but any type of scleroderma can even stop cold in its track at any point.

My guess is that's probably not very helpful info though. Most of the time, we are searching for "definites" so that we can know what to expect. Then we can set our mind to learning how to live with it, and get on with life. What's the hardest for most of us is dealing with uncertainty. Is the other shoe going to drop? WHEN is the other shoe going to drop?

I'm sorry there are no pat answers, only indicators, and generalities, and disclaimers. Sometimes I think I need more help dealing with the uncertainties, rather than the disease itself. Here are some warm hugs, just for you, Jalee. I wish I could say, everything is absolutely going to be okay for you, or it will definitely lead to such-and-such, but there are always rules and with scleroderma, the rules are more likely to be broken, for better or worse.
:emoticons-group-hug:
Warm Hugs,

Shelley Ensz
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#14 debonair susie

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Posted 19 August 2011 - 11:21 AM

Hi Jenny!

It was so wonderful to meet you in Chat, where we got to "visit" and learn about you! :happy-dance:

However, like you, I am hoping you will have gotten much more information, with regard to your health issues.

In the meantime, may you have great joy with planning your wedding! This should be a very happy time in your life :emoticon-hug: s
Special Hugs,

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#15 Jalee85

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Posted 21 August 2011 - 07:48 PM

It was great to get to talk to you as well! Thank you for spending the time to hear my story!

Jalee

#16 debonair susie

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Posted 21 August 2011 - 08:00 PM

It was all my pleasure, Jenny!

I hope you are able to join us again :high-five:
Special Hugs,

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#17 Jalee85

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Posted 26 August 2011 - 07:54 PM

If anyone happens to find any more research article on Capillary Drop Outs if you wouldn't mind sharing with me I would be really grateful!

Jalee