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An Update...

4 posts in this topic

Hi everyone,


Just a bit of an update...I was the one with the 'evolving' disease! Saw an immunologist which was a total waste of time....Went back to my previous specialist after a 7 or 8 month break. My blood results came back with quite a few abnormalities. He is still unsure what is going on with me, but I continue to become more unwell! My ana is back up again, my C3 and C4 are misbehaving and my immunogoblins or something are not right. He knows I have raynaud's and sjogren's, but still feels there is something more. He was leaning towards lupus as well, but after this lot of blood tests he has taken some more that he hasn't taken in the past. I am being treated with plaquenil, nexium (for the GERD) Norvasc for the Raynaud's and I take painkillers when things get bad with the joint pain.


It was quite a shock this time around as he said there were 6 abnormalities on my blood test results. Usually, I have one or two. I am feeling quite overwhelmed with it all. I am away on holiday next week and in one way I am glad to be getting away, but on the other hand I know that I will not be able to keep up with everyone. There are so many things planned.


Take care everyone,



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Deb, I'm sorry you don't have the answers to your questions but go on your holiday and have a good time. When you get back hopefully the doctor has what your looking for. Take care, Sam


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Just take it easy on your trip and don't try to push yourself. If you can't keep up (which I never can), just find alternate things to do which aren't so hard on you. Hopefully you're going to a beautiful place that just sitting and looking at the scenery is a joy.


I'm so sorry that you still don't have any answers and now - more questions. Hopefully by the time you get home, your rheumatologist will have figured some things out. In the meantime - enjoy your trip and friends!


Big Hugs,

Janey Willis

ISN Support Specialist

(Retired) ISN Assistant Webmaster

(Retired) ISN News Director

(Retired) ISN Technical Writer for Training Manuals

International Scleroderma Network (ISN)

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I am so sorry that you still don't know what is wrong with you. That is so frustrating! I hope that soon it will be figured out. Don't push yourself too much on your trip. Take it easy!


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