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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 LuckyJon

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Posted 23 October 2015 - 08:52 AM

Greetings, everyone.  First, I already greatly appreciate any responses - I feel VERY alone.  

 

I'm not sure the purpose of my first post.  I'm a 28 year old male, healthy (or at least thought I was), enjoy running and outdoors activities.  Started having swollen joints and joint pain over a year ago.  Took about 3-4 months to eventually get to a rheumatologist.  I'm positive ANA with mildly positive Anti-Ro/SSA.  

 

Symptoms so far have included two swollen toes last year and one swollen finger this year, intermittent joint pain and minimal tingling sensations in hands and feet.  I also have Raynauds, and have also had that for about a year.  So my doctor is positive that i have some sort of autoimmune problem.  Right now, he's considering it Undifferentiated Connective Tissue Disorder.

 

I recently had my first pulmonary function test, which showed some sort of mild abnormality (sorry, I can't remember exactly what it is), but that was the straw that broke the camels back on my level of anxiety.  I've had the symptoms for over a year, so i'm confident in saying that i've been undifferentiated for over a year now.  From what i've read, the longer I go without definitive symptoms, the better chances I have of a fairly mild condition.  But the pessimist in me (which is most of me) is afraid that i'm just trying to make myself feel better.

 

I guess that's it for my first post.  In a way, this has almost been a blessing.  I was very self-centered and greedy before these things started.  Now i can appreciate every day, the good and the bad, and i guess in that sense this has been a freeing experience.  I just hope every day that my disease is mild - and i can't help but wonder how much longer until I can rest at night.

 

Thanks again,

 

Jon 



#2 Shelley Ensz

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Posted 23 October 2015 - 09:20 AM

Hi Jon,

 

Welcome to Sclero Forums.  I'm sorry you have UCTD and send my best wishes to you.

 

As it happens, only 1/3 of people with UCTD ever go on to develop a more specific autoimmune disease, and only a slight portion of them develop systemic sclerosis. Perhaps the most challenging aspect of UCTD is learning how to live with the vast uncertainty, never being sure if or when the other shoe will drop.

 

That's no easy task!  Most of us need to muster all the support and coping skills we can find to deal with any chronic disease successfully.  The general rule of thumb is that if we are still quite upset two weeks after anything major, including an illness diagnosis, we should talk to our doctor to see what can be done about our anxiety, because anxiety can worsen any ailment and cause many symptoms all on its own.  In fact, it can ruin quality of life and impair health habits, making any illness even worse.

 

As I understand it, a huge thing with UCTD is to make sure that your Vitamin D levels are optimized, because the people with UCTD most at risk of progressing are those with low Vitamin D.  It is such an extremely easy thing to treat with sunshine and supplements, and so easy to track, that you could do yourself a major favor by staying on top of your D levels. It could be your new favorite good health habit!  There are even free programs that will help track your vitamin d needs and exposure depending on your longitude and latitude, etc.

 

It's nice meeting you and we hope to hear from you again soon, hopefully with news that you are feeling a tad better now that you do not feel so much alone!

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#3 LuckyJon

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Posted 23 October 2015 - 12:03 PM

Thank you so much. I know I am lucky to even have a good chance of staying in my UCTD limbo.

I take vitamin d every day! Although I know many of the published stats on UCTD, your post is still encouraging. It has been such a difficult ride the past year. Being told I have nothing at all, then the "lupus" word being thrown around, and now the "s" word. I also take comfort in that it's been quite some time now with mild to no symptoms, so hopefully even if I do have a differentiated disease, it will be on the mild end of the spectrum. That's my scared guy logic though, so probably not worth much.

Thank you for your response, I do appreciate it. Have a good one and I'll see you around :)

#4 Shelley Ensz

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Posted 23 October 2015 - 12:53 PM

Hi LuckyJon,

 

It is much harder for most of us to deal with the unknown, than the known. You are not only dealing with chronic illness, but you also have absolutely no idea what to expect next. Whereas, a person with already differentiated and diagnosed illness has a little bit more certainty, or at least a bit more peace of mind in being able to put a name to it.  It may not give any more control, but it at least gives an illusion of more control.

 

Most of us have a strong desire for a crystal ball. We want to know what to expect, so that we can know how to plan for it. It is perplexing to have an illness and not know whether you are going to last another year or many many more decades.  After all, it affects all your decisions.  If we had just one month left, for sure, it would simplifiy all sorts of decisions.  We could eat only dessert, as it wouldn't matter anyway.  We could spend all our money, just for the fun of it, even though spending would have probably lost its luster by then. We could get slobbery emotional with our friends and family. We could cancel our pending colonoscopy with glee and absolute abandon!

 

All our decisions become easier because we can assess our priorities.  But with the unknown, such as UCTD, you really and truly have no idea whether or not you should continue investing in a 401K or pull it all out for a very nice world cruise while you can still walk and talk.

 

That uncertainty can drive some or most of the anxiety. That's where taking a master class in dealing with anxiety and uncertainty can be so very helpful. Learning to deal with the unknown has been the project of the ages, of philosophers and religions alike. And until we figure out a way that works for us, most of us suffer quite a bit, and unnecessarily, when first faced with severe or chronic illness.

 

But it doesn't have to be like that!  There are many tools and skills and attitudes to help us over that hump, and learn to accept things as they are, with plenty of joy and happiness for each day.  I hope you find a little dose of it today, with the idea that it is definitely possible to learn how to thrive emotionally, even when our health remains detrimental or mysterious.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#5 Joelf

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Posted 24 October 2015 - 08:37 AM

Hi Jon,

 

Welcome to these forums!

 

I'm sorry to hear that you've been diagnosed with UCTD and I can understand how worried and anxious you're feeling, not less because of the uncertainty it can cause. Unfortunately, autoimmune diseases are extremely difficult to pinpoint, as they affect everyone so differently and it's very hard for your doctor to reassure you, as he probably has little idea how the disease will pan out for you.

 

As Shelley has advised, anxiety and worry can make the situation much worse, particularly with autoimmune diseases and it can also colour and spoil everything else in your life. I know it's easy to say, "try not to worry too much", but it's very hard to do this in practice (been there, done that! :wink: ) However, it may be that you'll never deteriorate any further and then the worry will be have been for nothing and if the worse scenario does happen, then worrying won't improve it either!!

 

Here's hoping that you'll remain as you are with no added problems and please do keep posting and let us know how you're faring.

 

Kind regards,


Jo Frowde
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#6 Margaret

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Posted 24 October 2015 - 12:54 PM

Hi Jon,

 

My son, Gareth, now 27 years old, was diagnosed with UCTD at age 18.  He has the positive blood work for scleroderma,  no skin issues, just all internal damage.  Needless to say,  I just realized how *silent* of a disease it is with his vertebra surgery, two days ago. 

 

This is a fantastic site with so much worthy information.  Continue to share your concerns and someone will chime in with useful information.  I am here because he also has Down Syndrome and Autism, making his communication skills very limited.

 

Take care, everyone.

Margaret



#7 LuckyJon

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Posted 26 October 2015 - 04:17 AM

Thanks for all your responses. It was a very rough weekend for me emotionally. Somehow I feel like I'm dying, even though quite literally no definitive changes have happened in a year, I ran 2 miles this morning, and physically I feel very good. My thoughts are with all of you.

I've also determined that at this point, being on the board is probably not good for my emotional state. Both of my Doc's have stated that they believe I could have a "mild" form of some kind of connective tissue disorder. I feel good, and the way I see it, every morning I wake up with no changes is one morning closer to getting that "free and clear" feeling that I so desperately want. I know that feeling may never fully materialize, but I'm starting to come to the realization that in reality, NOBODY is ever "free and clear". Aggressive cancer can strike at a moments notice, a car accident on any given day can leave you disabled or worse. We are all living on the razor's edge, every day, scleroderma or not! To pretend otherwise (like I used to do) is just foolish. I have a new appreciation for life now, and I truly believe this experience is a blessing in disguise.

With that said, again, I thank you for the responses. I just can't use this board as a means to fuel my paranoia and anxiety - and that's exactly what I have ended up doing. So with that said - I'm signing off now, for a while. I will report back to you all, good news or bad, at my next 6-month follow-up appointment. - I'll be thinking of you all, and I do hope that you'll do the same for me.

Good luck and I'll post back with you wonderful folks at some point next year.

Sincerely,

Jon



#8 Sweet

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Posted 27 October 2015 - 08:34 AM

Hi Jon,

 

Welcome to Sclero Forums.  I'm sorry you have UCTD and send positive vibes to you. Welcome! You will love it here.


Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 Shelley Ensz

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Posted 28 October 2015 - 06:44 AM

Hi Jon,

 

Absolutely, the wrong use of this forum (or any support venue) is to fuel anxiety. Many of us need to learn how to deal with anxiety first, before we can get any real benefit from any illness support venue.  I was very upset after my first in-person scleroderma support group, where I sat next to someone who had already had multiple amputations and was about to have even more,

 

I found her health situation very disturbing -- and even more so to imagine that I might be in her shoes some day!  But then after a few days, I thought, well, maybe I wouldn't meet quite the same fate, as I was not a smoker or heavy drinker, both habits she had that were probably greatly exacerbating her scleroderma.

 

Her attitude was still merry, though.  She was going to go out gambling the day before her next partial leg amputation!  Again, not a habit I indulge in, but she was not letting a little thing like sequential amputations impair her zest for her sort of enjoyment of life. There was a kernel of a lesson in there for me, in that no matter what dire fate scleroderma might have in store for me, I could still pursue my hobbies and figure out a way to enjoy life to the very end, if I so decided.

 

I realized that I had to change my attitude before going to another meeting. I needed to consider what I wanted from the meetings, and if they were only going to scare the socks off me, then I'd have to figure out another way to grow through this situation.

 

It helped me a lot to simply accept that the illness was different for everyone, and to remember that I was seeking examples of how to live happily regardless of outside circumstances, since living unhappily was very easy to do, even in the very best of circumstances.

 

But if I had remained upset over my first meeting, and not found the kernel of wisdom in it, I would not have gone back.  There is no sense in doing anything that is optional, that makes us feel worse!  So I 100% support your decision to chill on the forums for the time being.

 

After all, we are here to try to improve the lives of people who are dealing with scleroderma or related illnesses, so we hope that is what every member is gaining from their participation.

 

So, two thumbs up for you, and for your honesty.  I hope it is a comfort for you to realize that we are always here for you, if or when you ever need this particular type of support.

 

:hug-group:


Warm Hugs,

Shelley Ensz
Founder and President
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.

#10 Margaret

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Posted 31 October 2015 - 12:54 AM

Hi Jon ..... I hope you are still reading the posts, even if you aren't responding.  When Gareth was dx'd, at age 18, he *shut down* from depression and anxiety.  The doc told me that the same processes affecting his esophagus/internal organs were affecting the chemicals in his brain.  He has been on depression meds since then....only 10 mg daily, but it did make a difference. Please, don't hesitate to bring this up to your primary care physician.  Depression/anxiety can be a side affect of any autoimmune disease.....it's nothing to be ashamed of.

 

Take care, Everyone.

Margaret

Mom to Gareth, 27 years old, DS/ASD