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JaneLesley

Devon

8 posts in this topic

Hello, my name is Jane and I was diognosed with 'Limited Cutaneous Systemic Sclerosis' back in January of this year. I have been suffering with swollen hands and various other seemingly unconnected symptons since January 2000. Thankfully in January of this year I was referred to a Rheumatologist who gave the diagnosis of Scleroderma almost before we had shaken hands and introduced ourselves.

 

Others seem confused by my reaction of total relief - to have a title for my symptoms is so much better than having no name for it - for nearly 9 years I had been told most of my systems were pschycological - this is a hard diagnosis to deal with when you are feeling ill, especially at work -how do you say to your boss "I am feeling psychological today"? I have been very lucky in having a sympathetic boss and since the diagnosis have been given all the time off I need to attend occupational therapy classes, doctor and hospital appointments.

 

Visits to hospitals and doctors have turned given me a kind of 'celebrity' status and no one really knows how to deal with me. I am on a very steep learning curve. My husband has been incredibly supportive from the very beginning.

 

Jane

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Hello Jane

 

Welcome to the forum and the wonderful world of scleroderma!

 

I'm sorry to read that you had a difficult road to diagnosis, unfortunately many do and it and you may find it helpful to read others' stories about this.

 

Your reaction of total relief to your diagnosis will be familiar to many on this forum, as awful as a diagnosis of scleroderma was to hear (I knew what it was at the time) a lack of diagnosis would have been worse and I didn't even have to wait a long time for it.

 

You may want to consider asking for a referral to so a scleroderma expert because it's important to been seen by someone who knows the complexities of the disease, how it may progress and best treatment options. The list the link take you to includes various specialities so you want to pick out the rheumatologists. The Royal Free in London is a centre of excellence for scleroderma, I am a patient there myself and I recommend them! They also have specialist nurses that you can see when you're there and you can ring them when you're not!

 

Take care and keep posting.


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 Jane,

 

Welcome to the Forums!

 

I'd guess many of us experienced that feeling of relief to have gotten a diagnosis of a 'real' illness after years of being told (and half believing) that it is all in our heads. I remember one doctor telling me it was all stress. Silly man got me on a bad day and I think I snapped out something along the lines was the only stress I was under came from him. :rolleyes: I could just imagine him writing "difficult patient" in his notes.

 

I got a great laugh out of your line about "I'm feeling psychological today." What a visual my mind threw up.

 

I hope you post often and let us all get to know you. Y'know, your husband can join too - we have a number of folks who have loved ones with some form of scleroderma do that. He'd certainly be welcome.

 

Until you get a support group going, did you know we have a chat meeting on Wednesdays? You can find out about it by clicking on the word "chat" in the purple toolbar above.

 

Best wishes to you and your hubby,


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 Jane,

 

Welcome to Sclero Forums! I really enjoyed your post, and I can sure relate to it. My diagnosis was a long time in the making, too. I remember reading something about how a large number of diseases were diagnosed only by autopsy. So my poor husband had to put up with several years of me occasionally ranting, "I refuse to be diagnosed by autopsy!" That little bit of stubborness was probably helpful in getting me to the doctor's office, yet again, for another lively round of Diagnosis by Roulette Wheel!


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 Jane

 

Welcome to this friendly and informative forum from another Systemic Limited Sclero UK sufferer. :bye:

 

I was also very relieved when the cause of my bizarre symptoms were explained to me, although thankfully it didn't take 9 years for my consultant to reach a diagnosis!! :blink: I am also a patient at The Royal Free and The Royal Brompton Hospitals, where I've received really excellent treatment. :VeryHappy: My husband and friends have been very supportive like yours, although my friends are heartily sick of the subject of Scleroderma now as I'm afraid I've tended to bore them witless with it!!! :rolleyes:

 

Jeannie has told you about the Wednesday chat room; it's at 7pm UK time and I usually forego watching 'Emmerdale' for the pleasure of joining in. ;)

 

Hope to hear from you soon. :)


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

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International Scleroderma Network (ISN)

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Hi Jane,

 

Welcome to the forums! I was really fortunate (well, I guess) to have severe enough esophageal involvement that the diagnosis was pretty clear all along. I was pretty healthy otherwise for quite a few years, so I happily flew under the diagnostic radar until recently. No longer being undiagnosed definitely has its downside, but for me now the pluses outweigh the minuses. It makes doctor visits simpler, I feel much better on the meds I'm on now, and also feel a whole lot safer knowing that my rheumatologist is keeping an eye on my lungs.

 

"I'm feeling psychological today"--love it! :D

 

Hugs,

 

warmheart

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Jane,

Let me add my welcome to our group. I'm thrilled to have you! Well, not thrilled that you have Scleroderma, but thrilled you will be here amongst people that know what your talking about and can truly 'feel your pain'.

 

:flowers:


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Jane

 

I also wanted to welcome you. Rest assured that you will find a lot of moral support and good factual information here...so many helpful friends amongst us.


Sending good wishes your way!

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