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19 Posts
Hi everyone:
I wanted to update everyone about my unsolved mystery over the past 4 years of going from Dr. to Dr.. I was finally diagnosed with SLE by by my local Rheumy in June of this year. Since he seemed unsure about it all the other times I decided to go for a second opinion. Last Monday , My husband and I went to NYC to see a Lupus specialist at Mt Sanai medical center. The Dr made me feel so relaxed and made me feel like I am not going crazy. She reviewed all of my records from the past 4 years. I brought everything. I wanted to cover everything. She spent a good 1 1/2 with us and examined me. She left the room to look over everything and came back about 20 minutes later. She sat down and was very reasurring and told me YES I do have Lupus and that my Rheumy is correct but it sometimes takes years to put all the pieces together and the last piece to the puzzle for me was the ANA of 1280 along with all of my symptoms. She told me I will need to stay on the Plaquenil probably forever. The thing is I have been on it now for almost 5 months and I feel a bit better but still have muscle pain in my legs and sometimes feel so tired I cant function. Is that going to get better?? I also mentioned to her that my hands are always red and that I have told my Rheumy about for a few years and he says "I am not sure what that can be". This Dr says right away that I have Raynauds disease along with the Lupus. Come to think of it they do get blue and white in the winter or when it is cold and they get red and swollen when I am stressed and when its hot. Also my ears and tip of nose gets red as well. She hit the nail right on the head. I really liked her. I am thinking of switching my local Rheumy to someone else because i told him about my hands and even the rash on my face and he told me I need an endocrinologist because he is not sure what that is from. It is the malar rash . This Dr. picked up on that right away also. I always comes out about 1/2 hour after I am under fluorescent lighting (her office) . I get it all the time at my office also.
Well sorry to write a book about my visit but I wanted to update everyone on this. I took the news quite well but lately I have been crying a lot and just feeling so sad saying how could I get something so horrible. No one in my family has anything like this. I also had a very stressful life growing up and a very abusive first marriage and death of my grandmother 4 years ago whom I was very close with. It was 2 months after she died that I got sick. The Dr. seems to think all the stress took a toll on my immune system.
Well Thanks for listening. Hope all is well with everyone.
Kim:worried:
I wanted to update everyone about my unsolved mystery over the past 4 years of going from Dr. to Dr.. I was finally diagnosed with SLE by by my local Rheumy in June of this year. Since he seemed unsure about it all the other times I decided to go for a second opinion. Last Monday , My husband and I went to NYC to see a Lupus specialist at Mt Sanai medical center. The Dr made me feel so relaxed and made me feel like I am not going crazy. She reviewed all of my records from the past 4 years. I brought everything. I wanted to cover everything. She spent a good 1 1/2 with us and examined me. She left the room to look over everything and came back about 20 minutes later. She sat down and was very reasurring and told me YES I do have Lupus and that my Rheumy is correct but it sometimes takes years to put all the pieces together and the last piece to the puzzle for me was the ANA of 1280 along with all of my symptoms. She told me I will need to stay on the Plaquenil probably forever. The thing is I have been on it now for almost 5 months and I feel a bit better but still have muscle pain in my legs and sometimes feel so tired I cant function. Is that going to get better?? I also mentioned to her that my hands are always red and that I have told my Rheumy about for a few years and he says "I am not sure what that can be". This Dr says right away that I have Raynauds disease along with the Lupus. Come to think of it they do get blue and white in the winter or when it is cold and they get red and swollen when I am stressed and when its hot. Also my ears and tip of nose gets red as well. She hit the nail right on the head. I really liked her. I am thinking of switching my local Rheumy to someone else because i told him about my hands and even the rash on my face and he told me I need an endocrinologist because he is not sure what that is from. It is the malar rash . This Dr. picked up on that right away also. I always comes out about 1/2 hour after I am under fluorescent lighting (her office) . I get it all the time at my office also.
Well sorry to write a book about my visit but I wanted to update everyone on this. I took the news quite well but lately I have been crying a lot and just feeling so sad saying how could I get something so horrible. No one in my family has anything like this. I also had a very stressful life growing up and a very abusive first marriage and death of my grandmother 4 years ago whom I was very close with. It was 2 months after she died that I got sick. The Dr. seems to think all the stress took a toll on my immune system.
Well Thanks for listening. Hope all is well with everyone.
Kim:worried: