Right or Wrong diagnosis? :./
Starphyre posted:
Hi,
I was diagnosed in late 2009 with SLE. I had been to the ER repeatedly, with severe joint pain, very bad pedal edema, and ascites. None of the things they tested for were positive. They tested for pretty much everything under the sun, except for Lupus. About a month into being very ill, I found a doctor that decided to run more tests. He didn't reveal to me what the tests were for. About a month after that I was called into his office and told I had SLE. It was explained to me, as I was totally in the dark about Lupus. I was put on Prednisone and an array of other medications. I ended up having to use a walker due to pain, and continually falling down. I had a very difficult time getting in to see a Rheumatologist- it took months. I finally got in to see them and their initial response was "You need to be admitted today." Then they changed their minds after running my insurance info while registering me. Weird. Then I received a letter and was told I had no Auto-immune disease at all, not even Lupus. I returned to my Dr. and he was not happy about it and said something about "Don't those people know you are on Prednisone?" He told me that that could alter the results of the tests because I wasn't "Flaring". He stuck by his original diagnosis, and tried to find another Rheumatologist that would take my insurance. I ended up moving, long story, and because of all of it I got frustrated and came off my meds. I have been fine, for the most part, for nearly 2 years now. Oh and last I saw him, btw, I was told I had gone into remission. I'm really honestly just curious if the Rheumatology clinic could actually tell me that after only a couple of tests? I know the Dr. that diagnosed me has a very good reputation and has even won awards for Best Physician of the Year. I also know people make mistakes, But for an entire year? I've recently started having some bone/joint pain and other mild symptoms; that has led me to start questioning all of this again. If anyone has had a similar experience I'd like to hear about it. Any advice as well.
Thank you ~ StarPhyre
I was diagnosed in late 2009 with SLE. I had been to the ER repeatedly, with severe joint pain, very bad pedal edema, and ascites. None of the things they tested for were positive. They tested for pretty much everything under the sun, except for Lupus. About a month into being very ill, I found a doctor that decided to run more tests. He didn't reveal to me what the tests were for. About a month after that I was called into his office and told I had SLE. It was explained to me, as I was totally in the dark about Lupus. I was put on Prednisone and an array of other medications. I ended up having to use a walker due to pain, and continually falling down. I had a very difficult time getting in to see a Rheumatologist- it took months. I finally got in to see them and their initial response was "You need to be admitted today." Then they changed their minds after running my insurance info while registering me. Weird. Then I received a letter and was told I had no Auto-immune disease at all, not even Lupus. I returned to my Dr. and he was not happy about it and said something about "Don't those people know you are on Prednisone?" He told me that that could alter the results of the tests because I wasn't "Flaring". He stuck by his original diagnosis, and tried to find another Rheumatologist that would take my insurance. I ended up moving, long story, and because of all of it I got frustrated and came off my meds. I have been fine, for the most part, for nearly 2 years now. Oh and last I saw him, btw, I was told I had gone into remission. I'm really honestly just curious if the Rheumatology clinic could actually tell me that after only a couple of tests? I know the Dr. that diagnosed me has a very good reputation and has even won awards for Best Physician of the Year. I also know people make mistakes, But for an entire year? I've recently started having some bone/joint pain and other mild symptoms; that has led me to start questioning all of this again. If anyone has had a similar experience I'd like to hear about it. Any advice as well.
Thank you ~ StarPhyre
2 Replies |Watch This Discussion | Report This| Share this:Right or Wrong diagnosis? :./Hi,<br />I was diagnosed in late 2009 with SLE. I had been to the ER repeatedly, with severe joint pain, very bad pedal edema, and ascites. None of the things they tested for were positive. They tested for pretty much everything under the sun, except for Lupus. About a month into being very ill, I found a doctor that decided to run more tests. He didn't reveal to me what the tests were for. About a month after that I was called into his office and told I had SLE. It was explained to me, as I was totally in the dark about Lupus. I was put on Prednisone and an array of other medications. I ended up having to use a walker due to pain, and continually falling down. I had a very difficult time getting in to see a Rheumatologist- it took months. I finally got in to see them and their initial response was "You need to be admitted today." Then they changed their minds after running my insurance info while registering me. Weird. Then I received a letter and was told I had no Auto-immune disease at all, not even Lupus. I returned to my Dr. and he was not happy about it and said something about "Don't those people know you are on Prednisone?" He told me that that could alter the results of the tests because I wasn't "Flaring". He stuck by his original diagnosis, and tried to find another Rheumatologist that would take my insurance. I ended up moving, long story, and because of all of it I got frustrated and came off my meds. I have been fine, for the most part, for nearly 2 years now. Oh and last I saw him, btw, I was told I had gone into remission. I'm really honestly just curious if the Rheumatology clinic could actually tell me that after only a couple of tests? I know the Dr. that diagnosed me has a very good reputation and has even won awards for Best Physician of the Year. I also know people make mistakes, But for an entire year? I've recently started having some bone/joint pain and other mild symptoms; that has led me to start questioning all of this again. If anyone has had a similar experience I'd like to hear about it. Any advice as well. <br />Thank you ~ StarPhyre
leecat41 responded:
I've been diagnosed and undiagnosed with Lupus since 2004 and still don't have a firm diagnosis because I haven't had a positive ANA yet. My rheumatologist starting treating me for lupus suspect and has since changed his mind since. I will keep trying until I find out what all is going on with me. Don't give up!
To do what is right is not always easy, to do what is easy is not always right.
Report This| Share this:Right or Wrong diagnosis? :./I've been diagnosed and undiagnosed with Lupus since 2004 and still don't have a firm diagnosis because I haven't had a positive ANA yet. My rheumatologist starting treating me for lupus suspect and has since changed his mind since. I will keep trying until I find out what all is going on with me. Don't give up!
I had a positive ANA. I've been reading quite often about this problem. I'm sorry to hear that you are going through this too. leecat, Thank you so much for replying. I also just heard something very odd. My boyfriend and I went to a Halloween Ball and he noticed my pupils were glowing a bright green in the black light. He was all "Wow, that is so cool!" I did not know what the heck he was talking about, but apparently he looked it up and found that people with Lupus and/or Diabetes have this phenomenon happen due to a some strange build up in the eye lenses(?) First I've ever heard of it. Just thought I'd share that. Maybe we are more like Wolves than we know. lol. Thanks again and good luck to you.
Report This| Share this:Right or Wrong diagnosis? :./I had a positive ANA. I've been reading quite often about this problem. I'm sorry to hear that you are going through this too. leecat, Thank you so much for replying. I also just heard something very odd. My boyfriend and I went to a Halloween Ball and he noticed my pupils were glowing a bright green in the black light. He was all "Wow, that is so cool!" I did not know what the heck he was talking about, but apparently he looked it up and found that people with Lupus and/or Diabetes have this phenomenon happen due to a some strange build up in the eye lenses(?) First I've ever heard of it. Just thought I'd share that. Maybe we are more like Wolves than we know. lol. Thanks again and good luck to you.
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