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marsha

Update: Saw scleroderma expert this morning

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Good afternoon everyone!!!

 

I had my appointment this morning and was amazed!! What a sense of "I can finally breathe". His knowledge was so reassuring! I was glad to know that I have systemic sclerosis, not diffuse which was a relief! I have the last 4 letters yet what my doctors thought might be calcinosis is not which is a relief to me. I have to go back to Maine and have a PFT and then come back to CT and see him in 5 weeks. He is going to work with my doctors. What an amazing man!! Thank you again Miocean for sharing your story which pointed me in this direction. I think with a lot of hard work and some medicine changes I may get back to a "sort" of normal life. I will not let this disease take me over. Warm hugs and thanks again for all of your support!

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Hello Marsha

 

Isn't it great when you know you have a great doctor and therefore great care?

 

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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I know exactly what you mean! I guess my rheumatologist must have thought I was clueless about what scleroderma is - I was so happy to get the diagnosis! It's so good to know that somebody knows what they are talking about and even better, what to do to help you. So, strange as it may seem, :emoticon-congratulations:


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 Marsha,

 

I'm so pleased to hear that you've had such a satisfactory consultation with an excellent Sclero expert. It makes such a difference to have a specialist in whom you can have complete confidence.

 

When I first saw my lung specialist and he told me that he thought my lung fibrosis was due to a problem with my immune system, I was so relieved as I had convinced myself that I had Idiopathic Pulmonary Fibrosis and was basically going to die!! As a result of the release of nervous tension, I started babbling incoherently about immune problems in cocker spaniels? :rolleyes: ;) (I'm quite sure that from then on he decided I was a bit touched and has humoured me ever since!! :lol: )

 

Do let us know how you get on with your PFT and your next appointment in 5 weeks. I echo Jeannie's :emoticon-congratulations:


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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Yep as awful a diagnosis as scleroderma is there is a worse one...the diagnosis of "I don't know..."!


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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So True Amanda!!!

 

He said you can become the disease or let the disease become you!! I REFUSE to let this take anymore of my life than it already has... I am having the PFT done next Thursday and then 4 weeks back to see him! I'll keep everyone posted.

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