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Welcome To Debz

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Hi and welcome to the forums!


I saw that your post in the cholesterol thread was your first and wanted to take a minute to officially welcome you to the forums! I am glad you found us but sorry it is because of your "evolving" illness as you say.


I am sure you will find everyone here very warm, encouraging and supportive....and quite willing to provide you with information and advice when we can. I hope you will post often and tell us even more about yourself.


Again, welcome!


Warm wishes,


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Hi Debz!

Welcome to the forum! Please feel free to come here often and post and let us know a little more about you!


We are all friendly and supportive.




Lisa Bulman

(Retired) ISN/SCTC List Coordinator

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Fundraiser

International Scleroderma Network (ISN)

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Thank you all for such a warm welcome! :D


I am not sure I really 'belong' here, but my story that brought me here is a very long one....I won't bore you all with it. I have been seeing a specialist for 5 years now and we are no further in the diagnosis of any disease other than sjogren's....He has told me he feels that there is something else happening and that my sjogren's is secondary to it. The first rheumatologist I saw thought I had RA. I don't know what 'it' is all I know is that I am ill alot and not knowing what is happening to me is so frustrating. I am seeing an immunologist in February, so hopefully (I do say that in a skeptical way) he may be able to help me find out what is going on. It has taken a change in general practitioner for this to take place as she felt I wasn't getting the correct treatment from my specialist.


My main symptoms are swelling in the fingers, feet, lower legs (with pitting odema) and pain in my hands, wrists ankles and feet. I suffer from raynaud's also. I also suffer from GERD which I am taking nexium 40mg for. In the 5 years of seeing my doctor I have never had an endoscopy etc. He handles all issues I have. I saw an opthalmologist for my eyes and he did a rose bengal test which determined my eyes to be extremely dry and concurred the sjogren's diagnosis. I was put on steroid drops for 2 months along with tear replacement drops and gel for night time. May sound a bit wierd, but my eyes are really the least of my problems. My stomach problems are worsening and the pain in my hands are also getting worse. My index fingers have twisted and my pinky on my right hand is off on an angle at the middle joint. I have had xrays which do show degeneration of joints....also reported swelling. These xrays are not alot different from the first ones I had taken with the first rheumatologist. It did not show erosive arthritis.


As you can see, I am at a bit of a loss as to what is going on. My specialist sent a letter to my old general practitioner stating he 'thought' I may have lupus....I think the idea of the immunologist is a good one. My ANA was positive for 3 years at 1:320 homogenous and I have had other wierd blood abnormalities but nothing to pinpoint what is going on. The last blood test I had showed a negative ana, which shocked me as I am still feeling so ill.


Sorry this is so long....believe me I could have written a novel!! Thank you for your support. Until I know what is going on with my crazy body, I will stick around and read as much as I can.


Thanks again



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