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      Upgraded Sclero Forums!   05/18/2017

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perfect

Just diagnosed

25 posts in this topic

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

ISN Chat Host

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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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

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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. emoticons-yes.gif

 

 

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

 

Warm hugs,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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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

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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.

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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:

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Hi SusieQ, how nice of you to check on me. To do a quick update, I went back to the rheumatologist yesterday (my second appointment) and he went over all the tests and x rays which showed negative bood work for Sclero, but he said but you still have it. Well, then the lung x rays showed changes already so he ordered a cat scan for next week and a pulmonary lung test also. So we will see. I am trying to take it one day at a time.

 

My cup is half full, for sure. I have four children boy, girl, boy, girl. 34, 33, 30, 25 and they are the best things I have done in my life. I am currently managing a retail jewelry store, I have managed stores and owned my own business for over twenty years. Glad I do not own my own any more. I started taking classes online to go into the medical transcription world, because I knew I would not be able to be on my feet for the rest of my working career, so as I approached the end of my degree I developed the Raynaud's, and I cannot type (it hurts), and then I changed my degree program into billing and coding, ( I chose these because I thought I could work from home) but then the diagnosis of Sclero.

 

Sooo I do not know what to do, spend more money finishing this degree, and maybe never getting to use it, or ? So there is a lot up in the air. I also have a mom 82 with dementia that I have sole care of and just put into a nursing home. (In fact all of my symptoms I thought was stress for the past five years due to the situation with my mom.)

 

There is such a big part of me telling me to stop the schooling, cut my losses and just enjoy my life right now, and eliminate the stress that I can.

 

Susieq do you have crest, or diffuse? The doctor told me yesterday I have Crest. I need to do some more research on this, also I know they have not ruled out the lupus because of the photosensitivity I have developed over the last three years. Along with other symptoms, but that blood work keeps coming back negative, too.

 

You asked me where I am from well I am from Menominee Michigan which is about sixty miles north of Green Bay Wisconsin (Green Bay Packers) and tonight it is below zero. Well I have been to long winded here, and again thank you for being concerned, I really do appreciate it, and take care.

 

Love,

 

Susie

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Hello Perfect- I want you to know that so many here have the ups and downs with this disease. I have been very depressed when some new symptom came up and relieved when I was able to cope with it or it got better. It's hard to come to terms with something that keeps changing.

 

But as you can see from some of the fine people here who keep going and doing, there is most often a lot of hope for the future.

 

When you feel down, I hope that you can get some comfort from information and experience that people here will offer.

 

(((((((((((hugs))))))))))))

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Hey Susie,

 

I'm in Montana, and have 6 children. 23, 21, 18, 16, 5 and 4.I may have already told ya that...lol. Anyway, I forget a lot of things lately, don't know if that's just because I have so much on my mind, or if I'm just getting old. I too thought I might be just getting older and was like premenopausal, but wasn't. I was thinking of looking into taking online courses for medical transcription. But now I'm not so sure, I have such little energy, it's hard to make it to nap time in the afternoon. I've been sick most of my life with one thing or another, didn't know it was scleroderma. I don't have much skin involvement, my skin hurts, but it's hard. But my insides are all messed up. I started having reflux and bowel problems in my teens, but got really bad in my late 20's. Had reflux surgery at 27/28, and diagnosed with Crohn's at 29. Diagnosed with RA at 34, and took meds for that until January 2009. I was getting really sick all the time, and no one knew why, we thought it was the side effects of some of the RA meds I was on but in June found out it was Sclero. And in June also found out I have the Interstitial Lung Disease, and Pulmonary Hypertension. So, yes, it is all a little overwhelming, I hope your lungs aren't too bad. This sure has been a change in our family. Trying to keep my fingers and toes warm, so the Raynaud's don't cause ulcers.Taking care of the house, and re-delegating chores and just getting up and getting the boys to school. But I do what I can, and hope for the best! I've also gone to some counseling to realize there is more to me than just this disease. To try to stay on the positive side of things don't get me wrong there are good days and bad days emotionally still, and probably will always be that way. I am glad you have good doctor's. And I will be here to lend some support, where I can. Hope your having a good day today! Can't wait to get to know you more..

 

HUGS

Susieq40

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susieq I also look forward to getting to know you better too. Have a great weekend with your family, Susie

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:) Hi, enjoytheride, I love your name here lol. I agree with you about the ups and downs, one day you are all positive and the next you feel confused sad, a little cheated, at least that is how I am feeling right now. I am more confused than anything I think. Just not knowing if I should continue my education, I am 55 almost 56, should I spend another year on this, and they want me to do an (internship) at a clinic, (will I be sick during this period) I am afraid to schedule something like this, considering I just found out that I have this diagnosis. What to do, what to do? You were also right that I will find help and comfort on this site, I already have. Thank you and have a great weekend, I am Susie

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