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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 perfect

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Posted 18 January 2010 - 03:59 PM

Hello everyone, I was just diagnosed last week with limited systemic scleroderma, and I am scared. I was being tested for lupus for the past 8 months, and I finally asked my dermatologist to refer me to a Rhuematologist and I am so glad that I did. He was with me for about 2 hours and diagnosed the Scleroderma. I have read enough about this disease when looking up lupus so I knew what he was talking about. He said to me this is not a very nice disease to have, wow, I can not get this out of my mind. I am 55 years old female, and have had very weird symptoms going on for the past few years, including rashes, joint and muscle pain, photosensitivity, bladder, breathing problems ( they said I had asthma) I do have a lot of allergies so this seemed like it could be right. Diagnosed with hypothyroidism five years ago, and this past month I was diagnosed with Raynaud's, the rheumatologist said I also have something called dermatomyositis, and others.I am so tired all the time, some days I have energy and can get a lot done, and then others I feel like I have a 100 lb weight on me everything hurts, can anyone relate to this. I will find out next week if I have lung involvement, or kidney, or other internal organs involved. I am hoping that I do not. I am so glad to have somewhere where I can talk to people with the same problems. I find it hard to talk about this and my fears to anyone. I am always the strong one, everyone comes to me to talk and have me help them, so this makes it harder. Thank you for having this forum for all of us. Susie

#2 Shelley Ensz

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Posted 19 January 2010 - 10:22 AM

Hello Susie,

Welcome to Sclero Forums! I'm very glad you joined us, but sorry it is because of having scleroderma. I hope you do well on your other tests next week.

Is there anything in particular you need to do to help the dermatomyositis, yet?
Warm Hugs,

Shelley Ensz
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#3 Joelf

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Posted 19 January 2010 - 10:40 AM

Hi Susie

Welcome to this very helpful and informative forum although it's a shame you had to find us because of having Scleroderma.

I also have Systemic Limited Sclero with very little skin involvement (merely the tips of my fingers) but unfortunately my lungs have been affected. Like you I had very painful joints and swollen fingers and Raynauds so I can certainly relate to the pain that you're experiencing. However I have recently finished a course of IV Cyclophosphamide which was very successful and am also on a low dose of Prednisolone which has helped my joints a lot. :)

Please don't feel scared; there is most definately life after Sclero and a good quality life at that!! ;) :emoticon-hug:

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#4 Amanda Thorpe

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Posted 19 January 2010 - 11:41 AM

Hello Susie

Welcome to the forum!

I think everyone with scleroderma can relate to fatigue and pain, sometimes they're better and sometimes they're worse. The pain can be addressed with medication whereas the fatigue has to be managed, I understand it gets better but never entirely goes away hence having to find a way to cope with it.

We have some information on site about dermatomyositis that may be of interest to you.

I am glad to hear that the tests for internal organ involvement are pending and I hope that the results come back negative.

I'm with Joelf there's still good life to be had after scleroderma, it just looks nothing like you thought it would but that's not necessarily a bad thing!

Take care and keep posting.
Take care.
Amanda Thorpe
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#5 perfect

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Posted 20 January 2010 - 05:03 PM

Hello to all of you warm welcoming people. How wonderful to feel so accepted. I will have to tell you all that I am not to sure on how to navigate this site yet so please bear with me. I also would like to tell you that the rheumatologist called me this morning and told me the blood tests for Sclero came back negative but he said that I do still have this, this I do not quite understand. He also said that the lung x rays showed lung changes and damage, that he will discuss with me next week. This did not surprise me really, but it does make me more concerned, but I am trying to look at my cup being half full not half empty. Again thank you for all of your kindness.

Susie

#6 Sweet

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Posted 21 January 2010 - 10:05 AM

Hi Susie,

Welcome to your new home. I'm so sorry for all that you are experiencing right now. When I was first diagnosed I freaked. That was 10 years ago. As time went by I learned to adjust, and I'm sure you will too. You've come to a great place. We have so much information, and so many people that understand what you are going through.

Hang in there and I'm looking forward to knowing you better.
Warm and gentle hugs,

Pamela
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#7 Amanda Thorpe

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Posted 21 January 2010 - 10:40 AM

Hello Susie

As you can see you have graduated to the main forum!

Blood test results can be a red herring which is why they're only a part of the diagnostic process. When I was diagnosed my blood tests did not say scleroderma but my symptoms and biopsy did. It's a good thing that your doctor has not been thrown off course by them.

Take care.
Amanda Thorpe
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#8 red

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Posted 21 January 2010 - 11:49 AM

Hi Susie!

Welcome to your new family! We are here to listen to your fears, support you, lend advice and yes, we DO understand! It sounds like you have a great rheumatologist - thorough and understanding -- I'm sure he will take good care of you!

I was diagnosed a year and a half ago, negative blood tests too, and very little skin involvement.. I do have the joint pain, fatigue, and carpal tunnel, recently developed Raynaud's too; but was diagnosed with limited sclero mostly due to severe GI dysmotility issues...I've had asthma all my life but recently the breathing issues are more resistant to my asthma meds and have been sent back to the rheumatologist from my primary to see if the worsening is damage from the sclero. It is scary, I feel for you!

Keep in touch and let us know your progress, your questions. Lean on us for support, we are here for you!

red

#9 susieq40

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Posted 21 January 2010 - 01:26 PM

Welcome Susie!

I'm also a susie..but nicknamed..I'm actually vickie. So sorry to hear about your diagnosis. It is quite the adjustment. I was just diagnosed in June 2009. It's a lot to swallow, but sounds like you have a pretty good RA doctor. I've got lung involvement, that's how we found out what I really had. But I hope all goes well with your tests. And remember there are a lot of people here in the same boat...I can say there is a lot of support! Hugs, and keep us posted. :emoticon-hug:

#10 Snowbird

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Posted 21 January 2010 - 02:57 PM

Susie

I just wanted to say hello too. You have come to the right place for factual information. I always learn something new here and so will you. I agree with the others, it sure does sound like you have a very good rheumatologist as well, one worth keeping! I hope you let us know how your appointment goes next week, good luck with it.
Sending good wishes your way!

#11 KayTee

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Posted 22 January 2010 - 05:42 AM

Hi Susie:
LIke you I had always thought of myself as a problem-solver, strong and independent.
And I also found it very difficult to talk to family or friends about this disease. I'm still working on it.
I kept the diagnosis to myself for a month, and looking back, I was spiraling inward and downward.
My husband insisted I start telling our (adult) children and other family members. He was right. It was difficult to do - and there were lots of tears - but I did feel better and more hopeful after.

Good luck and best wishes.
Kay Tee

#12 Sharon T

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Posted 22 January 2010 - 12:25 PM

Hi Susie,

Just adding my welcome. I have lung involvement, as well as gerd, colitis, Raynauds and thyroid issues. Today I had a liver ultrasound to see if my liver has decided to join the scleroderma lineup. I've only known I had scleroderma for less than a year, and its been a real up and down ride emotionally. However, I now realize that I've actually had many of these symptoms for many years, just never was able to put it all together and know what was the underlying cause. I don't seem to be getting any worse, and now that I've gotten used to the idea that I'm "sick" (as opposed to just mentally unbalanced...), life with scleroderma is much like life before I knew I had it! I'm trying very hard to just live each day and not worry about getting any worse. I've even started telling my friends about the disease (which they find just fascinating...). Best of all, I've started making plans again for the future. Because there will be a future, of that I'm certain now. Hang in there and don't let the scary stuff get you down. :)
Sharon T.

#13 perfect

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Posted 22 January 2010 - 04:50 PM

Hi Sharon, thank you for welcoming me. I was told a couple of days ago (My new rheumatologist doctor called me) that I do have lung involvement and changes and some other blah blah blah that I just sort of blanked out about. He said he would go over with me at my next appointment next week. I also Sharon have thyroid problems, gerd and Raynauds. Along with irritable bowel and photo sensitivity. I was glad to see your post, along with the others, and the positive attitude everyone has. I am trying to look into the future with a positive out look which is my personality in general. I also can look back and know I have had these symptoms for years, but mine also just came together. I believe I am lucky and I am at the right doctor. Sharon what do you take if any thing for the lung involvement. I hate the feeling of not getting enough air, ( which I always blamed on asthma). I am hoping the doctor can help me out with some meds to make me feel better with this. Thanks for sharing. Susie

#14 debonair susie

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Posted 23 January 2010 - 09:44 AM

Hi Susie

...and I would also like to take this opportunity to welcome you here, where you have already found the pulse of this community to be very warm and caring!

I am so very proud to be a part of this "family" because they do have good hearts and are so supportive.

You have already gotten some great information and once you do find it much easier to navigate around here, you will find even more helpful information.

In the meantime, I'm glad you are here now.
Special Hugs,

Susie Kraft
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#15 perfect

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Posted 23 January 2010 - 04:23 PM

Susie, nice to meet you, I am so glad to have made so many friends already. I look forward to having all of you for friends, and I hope I can offer hope and support to all of you also. Susie

#16 perfect

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Posted 23 January 2010 - 04:38 PM

Hi, KayTee Again I have to say thank you for a warm heartful welcome. I also did not tell my children for a week or so, I have four adult children which three are married, and it was hard, so when I did tell them I did not tell them all that can happen because I just could not. But I then found some good articles on the web and forward them to all of my children. I just feel like everything is not real yet which makes it hard for me to talk to them. Then I had to talk to my employer which was not easy either, she wants to know what is going to happen and I have no answers for her. Again thank you and stay good. Susie

#17 Jeannie McClelland

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Posted 24 January 2010 - 04:30 AM

Hi Susie (and any other new member I may have missed whilst traveling),

Welcome to the Forums! Aren't they great? One of the worst things about being diagnosed with a rare, chronic, and potentially serious disease is finding a 'community' to belong to. Having sympathetic, understanding, and knowledgeable friends make a lot of difference. It's nice to be told that you're not crazy; that yes, such and such a symptom might well be related to the scleroderma; and best of all, there is life after diagnosis. Posted Image


I hope you all will post often and let us get to know you better!

Warm hugs,
Jeannie McClelland
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#18 KayTee

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Posted 24 January 2010 - 07:42 AM

Hi Susie:
I'm so glad you talked to your children and hopefully found some peace of mind.
I also used the web to send a more informative email after I had spoken to them directly.
What did we ever do without it??
One of my sons said very directly: I am no longer a child. I have a job, career and family, and you do not need to keep anything hidden from me because you worry about how I feel. I will be there for you.
Needless to say - lots of tears. But good ones.
Stay in touch and best wishes.
Kay Tee

#19 Sharon T

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Posted 26 January 2010 - 09:43 AM

Hi Susie ~

The lung issues for me (primarily shortness of breath when walking or exercising) seem to improve when I'm on steroids (prednisone) and/or imuran (an imuno-suppressant), because the fibroids which cause the lung problems are the result of inflammation when my immune system goes into high gear and attacks my body. Since I also have mild pulmonary artery hypertension (only with exercise), I was given Ambrisentan (which is supposed to soften up the vessel so its more flexible and thus transmits more blood with less heart effort). I really felt better on the Ambrisentan but had to quit taking it because my liver function tests showed elevated liver enzymes, which is not good I'm told. So now we're waiting to see if the Ambrisentan was the problem or whether my liver is actually affected by the scleroderma. Anyway, one thing my rheumatologist said to me is that since I've had most of my systemic involvements for a while now, he doesn't think they will get much worse (i.e., the lungs may not develop any more fibroids, etc.) That sounded good to me! And if that actually is the case, then all I have to worry about is the sclero affecting the few presently unaffected organs in my body! :P
Sharon T.

#20 susieq40

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Posted 27 January 2010 - 06:16 AM

Susie,

It's Susieq...hope you are doing well today. Was thinking of you! I remember when I recieved the diagnosis of scleroderma, Seemed sooo overwhelming, then got a second opinion to confirm for sure. and then I cried. But now, just face each day as it comes, be thankful for even the smallest of things, and try to enjoy each and everyday. Staying positive is hard, but well worth the effort. Keep us posted. Tell us more about yourself..where you're from and about your family! I love getting to know everyone! I'm a mom of 5. 3 original, and 2 adopted. I also live in Montana. I love to paint and sew and scrapbook when I have time or the energy. I hope you have a great week! Hugs!
Susieq40 :flowers: