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Possible Scleroderma


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#1 sarasmile

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Posted 29 November 2009 - 10:07 AM

Hi everyone. I'm new to all of this. I don't think I've ever even posted on a forum before...anyways, I've been reading tons of posts over the past few days, and while finding out more about scleroderma has scared me, the posts have also been encouraging. My story is somewhat just beginning. I'm only 22, but I've been struggling with extreme fatigue, various aches and pains, difficulty breathing, heart palpatations, and generally just feeling gross all the time for many years now. After hearing my family practitioner tell me I was fine a million times, I decided to try a new doctor a couple weeks ago. I just received a diagnosis of scleroderma a few days ago and have been recommended to a rheumatologist. I was puzzled because everything I read seemed to focus on skin symptoms, which I have never experienced. I never really thought much of my hands tingling or throat hurting. I didn't even mention these things to the doctor who diagnosed me. But now I'm worried I'm either being paranoid or that it will get worse.

Right now I'm just scared. I'm not really sure how positive the doctor is that is truly is scleroderma, and I'm nervous to find out. I'm wondering if there are others out there around my age, especially who haven't experience skin symptons, and what their experience has been.

Thanks,
-Sara

#2 Amanda Thorpe

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Posted 29 November 2009 - 10:39 AM

Hello Sara

Welcome to the forum you're in the right place for all things scleroderma.

Getting a diagnosis of scleroderma can be very frightening. It would seem odd for your doctor to diagnose you with scleroderma and not be sure of it, it's not a diagnosis given lightly. It would be interesting to know what clinical symptoms your diagnosis was based on, what type of scleroderma you have and what your blood tests indicated. If you are doubtful about the diagnosis the only way to confirm the situation is to talk to the doctor who diagnosed you and get your questions answered and there's no good reason why you can't get these answers.

In the meantime you may find it helpful to look at our page on emotional adjustment. Could you be in denial? I ask that as a non medical layperson with no idea whether you are or not.

Perhaps you'll let us know how things go and take care.
Amanda Thorpe
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#3 Jeannie McClelland

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Posted 29 November 2009 - 02:25 PM

Hi Sara,

Welcome to the Forum. I hope we can provide you with reliable information and friendly support. We do have a few younger members who hopefully will see your post and chime in with their experiences, but our membership does pretty much reflect the demographics of the disease: we are mostly women who are 40 and above, although we do have some fellows and parents of fairly young children or young adults.

Why do you think your doctor might be unsure of your diagnosis? And I guess the more important question is when do you see the rheumatologist? If he concurs in the diagnosis, I would certainly try and see a scleroderma expert. Most of us feel pretty strongly about that, I think. Scleroderma is such a rare disease that even rheumatologists (who aren't scleroderma specialists) often may only see one or two cases in their entire career.

I hope you'll post often and let us get to know you. Please don't hesitate to ask questions.

Best regards,
Jeannie McClelland
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International Scleroderma Network

#4 waterview05

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Posted 29 November 2009 - 06:28 PM

Hi Sara,

I'm a little older than you (soon to be 39), but started experiencing symptoms when I was 35. I had cold, tingly finger tips for months and never mentioned it either. I found out later that is Raynauds which can be a part of scleroderma. The skin tightening came later.

As mentioned by others; scleroderma is not diagnosed lightly and there must have been indications in your blood work. It also won't hurt to get a second opinion. I made the mistake of taking things for granted and didn't start physical and occupational therapy early enough. I know it is scary, but you can make it through this as many of us have and are. Surround yourself with very positive people and it's great that you are reaching out here. I just joined several days ago and it's wonderful. Also, check your local area for a support group.

Don't ignore any signs or symptoms. Tell your doctor everything; even things you think won't matter; because they do. I started keeping a journal. It was also therapeutic.

Best wishes and lots of hugs.
Kelly

#5 sarasmile

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Posted 30 November 2009 - 03:13 AM

I guess I'm still slightly skeptical of the diagnosis for a few reasons. One, it was very quick. It was the first time I'd seen this doctor, and after 20 minutes in the office and several blood tests, I received this diagnosis. I know that blood tests alone are not supposed to be a diagnosis, and without skin involvement and my age, it just seemed like a quick conclusion. I didn't really get an explanation of the other criteria used. I'm in the process of trying to set up an appointment with the rheumatologist. (By the way, I'm in Atlanta, do you have any recommendations?) I will keep you posted (pun intended). Thanks for listening!
-Sara

#6 Amanda Thorpe

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Posted 30 November 2009 - 01:09 PM

Hello Sara

As it happens we do have a list of scleroderma experts.

Take care.
Amanda Thorpe
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#7 sarasmile

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Posted 03 December 2009 - 04:03 AM

I have an appointment with the Rheumatologist December 15th. What can/should I expect the appointment to be like? Will they immediately start running tests? If so, what kind? Is there anything in particular that I should ask about?
Thanks,
-Sara

#8 Shelley Ensz

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Posted 03 December 2009 - 04:45 AM

Hi Sara,

Congratulations on graduating from our Welcome Forum! We are moving your introductory thread to our Undiagnosed forum, where many others can share support and give insight on the diagnostic process.
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.

#9 Amanda Thorpe

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Posted 03 December 2009 - 11:23 AM

Hello Sara

Congrats on the pending appointment! I wouldn't hazzard a guess at what they might do as I'm in the UK and no doubt things are done differently.

What I would suggest is that you think about what you want out of the appointment as well as what they might do. Think about what questions you have and write them down, think about any particular symptoms you want to discuss and write them down so you remember everything you want answered. Also consider taking someone into the appointment with you because it can all become a bit of a blur! Don't be afraid to ask questions in particular why? and why not?

If you do have a rheumatic disease, whether scleroderma or not, you'll have plenty of rheumatologist appointments and tests for years to come! Actually when I first realised that I cried :crying: . It was my first appointment after diagnosis and I sat in the car, whilst hubby found a wheelchair, and I though I don't want to be ill, I don't want to have to see consultants, I don't want tests and I don't want to be admitted. Well I see my rheumatologist this month and now it's like seeing an old friend! :lol:

I hope you get some answers and do remember to let us know how it went.

Take care.
Amanda Thorpe
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#10 judyt

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Posted 03 December 2009 - 12:04 PM

Hi Sara,
I have just read your post and want to say to you that I am now almost 66 years of age and the first symptoms of CREST arrived in November 1966 when I was 22. I remember it clearly because we were visiting England from New Zealand and were going on a visit to Coventry where Lady Godiva (who rode naked through the town) became famous. I developed my first migraine that day and my first experience of Raynauds. I think my first esophageal symptom occurred when I was about 11 or 12, I remember having severe colicky pain and having a barium X-ray but no diagnosis. It took until 2003 for anybody to recognise these symptoms and all the others which developed over the intervening years and come up with a diagnosis. Anyway at 65 I am getting along quite well, taking lots of medication each day and trying to do as much as I can. Over the years some symptoms have come and gone, others have come and stayed so the way you are today is not necessarily how you will be for ever, listen to your doctors, ask lots of questions, follow sensible advice, get plenty of rest. I too was never truly fit as a youngster, all sports were an effort but I kept trying and now I go to a gym twice a week.
Be brave and look after yourself.
Judy T

#11 sarasmile

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Posted 04 December 2009 - 02:23 AM

Judy,
Thank you so much for that encouraging post. With all the bad news out there, it's refreshing to hear that someone had symptoms young and is still living a long life. Stories like that are exactly what I need to hear right now.
Thanks
-Sara

#12 Amanda Thorpe

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Posted 04 December 2009 - 03:02 AM

Hello Judy

Welcome to the forums! I'll be adding you to my list of sclero "old timers" which I refer to now and then to demonstrate that having scleroderma does not mean you're going to die straight away. I am pleased to say the list keeps getting longer!

I hope you keep posting and take care.
Amanda Thorpe
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#13 Jeannie McClelland

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Posted 05 December 2009 - 02:06 PM

Hi Judy,

Welcome to the Forum! Thanks a million for your wonderful post. It's always good to hear a 'success' story.

Um, your first Raynaud's attack and Lady Godiva had nothing in common other than location, did they?? Posted Image

I hope you post often and let us get to know you better.

Best wishes,


Jeannie McClelland
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#14 judyt

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Posted 09 December 2009 - 06:01 PM

Hi Jeannie,

I have just read your comment about Lady Godiva!! Actually I hadn't made the connection there, but no, I was very warmly dressed with a hat on and all. Actually as far as the Raynaud's goes it really got established during the 2 years we were in UK, in those days it was so much colder there all year round than here in New Zealand and I spent almost every weekend thoroughly miserable with white hands and solid blocks of ice for feet. I do remember trudging around the tourist spots with a long face most of the time, my companions must have thought I was a real loser! Actually I was with my husband and 2 other friends and they are all still around so they must have put up with me. The hardest time of all believe it or not was in Cape Town, where we went for 8 months on the way back home. It is so lovely and warm there most of the year, BUT shopping was purgatory because all the shops were air conditioned - instant freeze for me!

My dear husband is nagging at me to get going because we have a dinner date so must go.

Judy T