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Tamster1

Newly diagnosed with systemic sclerosis (SSc)

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I'm a 50 year old female with secondary Raynauds for about 2 years now and was diagnosed last week with SSc.  My Pm/Scl 75 and 100 were high and I have the thick skin along my index fingers, splitting on my fingertips, joint pain/swelling in my hands, patches on my knees and feet, fatigue, and just starting to deal with heartburn.  I see a rheumatologist on November 6. 

 

My doctor is putting together a list of tests I should have done and I'm doing a lot of research in preparation for my first visit.  Any helpful advice as I prepare for my visit and as I start this journey?  So far the hardest part for me has been realizing no doctor can look at me and tell me what the disease will do or what it will look like in my particular case.

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Hi Tamster,

 

Welcome to these forums!

 

I'm sorry to hear that you've been recently diagnosed with scleroderma and I can understand how concerned you must be feeling. We do recommend that our members consult a listed scleroderma expert, as this complex diseases does require specialist knowledge and expertise, which can be beyond the scope of the average common or garden rheumatologist.

 

To help you with your upcoming appointment, I've included a link to our medical page on Preparing for Doctor Appointments, which I hope will answer a lot of your queries. You're correct when you say that no doctor can predict the progress of the disease, which is what makes it so complicated to diagnose and treat.

 

Please do let us know how you get on with your appointment on November 6th.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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Having recently been diagnosed, I would hope that your doctor would arrange for an examination of your upper digestive tract along with a heart echocardiogram, kidney function tests and lung function tests as a minimum.

 

Any other tests may be symptom led.

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Hi Tamster,

 

Welcome to Sclero Forums.  It sounds like you have a pretty good handle on things already.  My tip would be to try to learn how to enjoy and not stress over the medical tests, because they will become your new normal.  The vast majority of tests you have taken will turn out with normal results, or they will pick up stray things that eventually turn out to be nothing.  The wait between having the tests and getting the results can be excessive and thus nerve-wracking. 

 

Your first round of tests is likely to turn out basically fine. At this very early stage, they just need to establish your baseline, of how your hearts, lungs, kidneys and g.i. tract are functioning right now so that any changes can be detected early. They are not expecting to find any major problems for years down the road (even if that).  Most of us waste too much emotional energy on the initial doctor appointments, perhaps from trying to prepare ourselves emotionally in case anything bad does turn up. 

 

Eventually I got the hang of not troubling trouble until trouble troubles me -- but I didn't learn that as quickly or easily as I would've wished, and if I had it to do over again, I'd have focused more on finding ways to relax and add joy to my life during that stage.  Attempt to learn about the issues, stay organized, try to stay chill, try not to get too worked up about things because like as not, this is a very long term condition to deal with, and stress only makes everything worse.

 

And, stay plugged in to Sclero Forums, as we are all here for you! 

 

: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.

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Dear Tamster1,

 

I was diagnosed when I was 25 and I am 49 now. I am in better health now than I was at 25. I figured out what my triggers were for a flare. It was stress and too much sunlight. Stress being the major one.  With the help of a psychiatrist, I don’t worry about this disease. Worry won’t change it but only make it worse in my case.  I have tried to find the positive in it. My face looks way younger than all my friends. I have a fair complexion but my feet are always brown.  

 

I know this is a serious illness, but I try to find humor where I can and it really helps me emotionally. I wish you the best of luck at your doctors appointment.

 

Sincerely

keena

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Hi Keenarochelle,

 

Welcome to these forums!

 

You're absolutely right about stress being one of the worst triggers for autoimmune diseases. However, I can certainly admire your positive attitude, including humour, which is one of the best ways to deal with an illness such as scleroderma.

 

Now you've joined our community, I do hope you'll continue to post to encourage other members who are feeling worried and concerned about the disease.

 

Kind regards,


Jo Frowde

ISN Board Member

ISN Secretary of the Board

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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