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jeannie mcc

How long do you think you had sclero before you were diagnosed

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It took over a year of doctoring before I got the actual diagnosis of sclero. But when I think about it I've had an autoimmune disease since my teens. I started with being hypo-thyroid in my teens; then 7 years ago I dealt with terrible gstro problems that were mis-diagnosed as Celiac disease; then I had shingles (another autoimmune); then the real fun started. I developed peripheral neuropathy of my hands and feet that also led to swelling and extreme tightness of ths kin. It was a long year of going from doctor to doctor before I stepped in front of a rheumatologist whose speciality is sclero. She took one look at me and immediately knew I had Sjogren's and suspected Scleroderma. Now I have 6 different diagnoses of autoimmune diseases and they say I'm an autoimmune disaster. I struggle daily with this and have terrible reflux and gastro involvement, along with lung involvement. I also have skin involvement over my entire body and extreme pain in my legs and joints. My fingers are starting to curl like in the sclero pictures and that is really bothering me. I am on so many meds its terrible. The fatigue is terrible too and my life has changed so dramatically I'm not even the same person I used to be in a lot of ways. So much for being the energizer bunny............my batteries are dead.

 

Warm hugs,

 

Peggy

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Hi all!

 

Thanks to so many for responding to this. It's a question that's interested me for some time. My sense is that all of us think we were showing symptoms for a long time before getting a formal diagnosis, that it took a "constellation" of symptoms to get the correct diagnosis, and it's about 50/50 whether or not a rheumatologist made the diagnosis.

 

I think I was more relieved than anything else when someone finally put a name to what was going on. I could find out more about a specific disease, find out what sort of tests and treatments would be involved, and take an intelligent (well, at least I hope so) part in my care and the decision making process. Retaining some control over my life is very important to me.

 

If I could wish for two things for all of the people out there who are still struggling to get a diagnosis, it is that they get it quickly and that they are treated with dignity and respect.

 

Best wishes and warm hugs to all of us!

 

JJ

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