Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Hi everyone~
I need some help with a problem I am having.
The first rheumatologist I ever saw many years ago diagnosed my SLE. She was wonderful. Had a great bedside manner, easy to talk to. Problem is that after a while she started telling me that she had no idea what was going on with me and would make jokes that I was a medical mystery and that I did not have the "typical" SLE symtoms. I had no idea there were typical anything with autoimmune diseases. One of the things I liked about her (besides being easy to talk to) was that she would pretty much do anything I asked of her. If I asked her tomorrow to take me off work, she would ask where to sign the papers.
The rheumatologist I see now is very knowledgeable. He heads up Lupus and Sjogren's research at the medical school here. However, he has a poor bedside manner and is not easy to talk to. I can never get in to see him when I am feeling truly lousy and he is hesitant on taking me off work. He even was hesitant on giving me a handicap sticker for my car. At one point he was pushing for me to take time off and now when I ask him he says that he feels it is better for my body to continue to work and move. I can barely walk now and working a 12 hour shift at the hospital kills my body. UGH!!
I am wondering if I should not go back to the original rheumy since I feel like my treatment options have run out and the only thing I have left is pain control...which any doc can do. If I go back to her, she will agree to take me off work...even if just temorarily or even a reduced schedule. It's not that I want to stop working, but I just can't handle the 12 hour shifts any more. I would be willing to continue to work at maybe three 6 hour shifts with the rest being covered my disability.
I should mention here that I have seen several other rheumys. One told me I was full of shit and there is nothing wrong with me. One told me he couldn't do anything for me. And another lost his medical license due to fraud!!!
I am so confused!! Stay with the one that knows alot but has poor patient etiquete or switch back to the one that is easy to talk to and get in with but shrugs her shoulders and says she has no idea what is wrong with me.
Thanks for your help.
I need some help with a problem I am having.
The first rheumatologist I ever saw many years ago diagnosed my SLE. She was wonderful. Had a great bedside manner, easy to talk to. Problem is that after a while she started telling me that she had no idea what was going on with me and would make jokes that I was a medical mystery and that I did not have the "typical" SLE symtoms. I had no idea there were typical anything with autoimmune diseases. One of the things I liked about her (besides being easy to talk to) was that she would pretty much do anything I asked of her. If I asked her tomorrow to take me off work, she would ask where to sign the papers.
The rheumatologist I see now is very knowledgeable. He heads up Lupus and Sjogren's research at the medical school here. However, he has a poor bedside manner and is not easy to talk to. I can never get in to see him when I am feeling truly lousy and he is hesitant on taking me off work. He even was hesitant on giving me a handicap sticker for my car. At one point he was pushing for me to take time off and now when I ask him he says that he feels it is better for my body to continue to work and move. I can barely walk now and working a 12 hour shift at the hospital kills my body. UGH!!
I am wondering if I should not go back to the original rheumy since I feel like my treatment options have run out and the only thing I have left is pain control...which any doc can do. If I go back to her, she will agree to take me off work...even if just temorarily or even a reduced schedule. It's not that I want to stop working, but I just can't handle the 12 hour shifts any more. I would be willing to continue to work at maybe three 6 hour shifts with the rest being covered my disability.
I should mention here that I have seen several other rheumys. One told me I was full of shit and there is nothing wrong with me. One told me he couldn't do anything for me. And another lost his medical license due to fraud!!!
I am so confused!! Stay with the one that knows alot but has poor patient etiquete or switch back to the one that is easy to talk to and get in with but shrugs her shoulders and says she has no idea what is wrong with me.
Thanks for your help.
The question about Mr. Bigshot is whether he has appreciably done anything to improve your symptoms and ability to live a normal life. If not woop-a-t-doo about his title and position at the University. Seems to me like there's no cure for this - just different stabs to make it more tolerable. If his net effect is the same as the less brilliant but more friendly and helpful Rhumy I'd say go with her. Meanwhile you can keep researching online for new approaches and new clinical trials. My only warning about taking 6 or 12 months off is that the job market is not really friendly to discontiguously employed folks at the moment. But if you're at the end of your rope of course do what you gotta do.
My current rheumy has come to me rescue so many times, helping to get to the bottom of strange symptoms and more recently coming up with nontraditional therapies for my PN when I developed allergies to the conventional medications. He also does research and only sees Sjogren's patients so he speaks fluent "sjogren's."
Of your two choices, I think I'd go back to my PC doctor and ask for help with symptom management. If you don't have a good relationship with your PCP, then try someone else. I found that going to a woman MD wasn't always as helpful as I had hoped. If you have any nurse friends, ask them who they see. Sometimes folks at Sjogren's support groups can also give you insights about other options. Yours really stink at this point, but try not to get discouraged! It took me nearly six years to find someone who was worthwhile, so I'm guessing there is someone there for you, it just may take awhile to find him or her.
Good luck!