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Just diagnosed

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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

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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

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.

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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:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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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

ISN Support Specialist

International Scleroderma Network (ISN)

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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

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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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

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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:

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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!

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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

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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.

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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

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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

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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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

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