questions

[trector1955]

Hello
   I have some questions for you. I went to a rheumatoist and was told I had Sjogrens. My sister went to the same Dr. the year before with really high ANAs and was told she was fine. all her blood work came out ok. She has Fibermyalgia. I have another sister with Graves Di ease and a first cousin with many overlapping tissue diseases. My sister that has the high ANAS doesn't have any other systoms except with her Fibermyalgia. No Dry eyes ect. The Dr. did say her ANAs were so high she should have lupus. but the blood work came back neg. could the blood work be messed up? What kind of tests does she need to take. I am trying to get her to go to a different rheumy but since she was told she was ok and not to come back until she has systoms. she won't go. What would make her ANAs so high? I am going to see  my Rheumy on Thurs and going to ask about her too. I am confused about all of this. I know some people around here have a really long and hard time getting dianosted. She is so much stronger than me. We just both of us had a table at the local flea market and was out all day. I was the one that got sick. She did it for two days. everyone does not understand how tired I get. I hate it. I don't get to bed until late at night and sleep late in the day. I can't help it they all say that is bad for me. I get so tired. do all the autoimmune diseases attack your organs?  Does anyone have any thing to say on this? I would like to hear some comments.
Thanks Theresa

[Seeker]

G'day Theresa, I would say an second opinion would be an excellent Idea.  If you were told you were going to have to have major surgery wouldn't you want a second opinion?  SjS is not major surgery, but it can affect your quality of life and your health.  Getting proper treatment is very important.

Auto immune diseases are very sneaky.  They can affect each person differently and the severity changes also.  With SjS you can go a very long time without any symptoms.  Then "Poof" your worse than ever.  I would recommend that you peruse our site extensively.  You will find a lot of good information and help.  Remember, you are now a part of a big family. You will always find help and support here. 

Seeker

[Scottietottie]

Hi Theresa 

I can't answer the question about your sister I'm afraid because I don't know that much about bloodwork. If she's feeling finen - well that's got to be a good thing.
Fatigue and sleep disturbances seem to be a part of SjS. Plaquenil can help with the fatigue but does not banish it totally.

SjS attacks your moisture making glands. I can attack other organs but often it doesn't. Don't live your life expecting it do do something nasty - because it may not and then all that worry would be over nothing.

I've had either lupus or SjS for at least 20 years now and it hasn't attacked a major organ yet, in my case. (My dx is lupus/SjS overlap) If I don't have work to go to I sleep on into the afternoons too. When I have work - I get up.

Take care - Scottie