i have had an incredibly difficult time with my lupus sle diagnosis. i had not even heard of it before. when i was diagnosed i went to my gp for some meds and vit d and to talk casually about my diagnosis. she literally laughed and said in her opinion i did not jave lupus just a vitamin deficiency. i was quite shocked as i thought her unproffessional manner was plain awful.
i had to return a few times as the hydroxy made me flare really badly and she was shoked at how quickly i delined and after several months of denial decided to admit that the tests were right. in the mean time i went to st thomas's for a second opinion and they said that i had lupus.
to say that i feel dreadfull both painwise and spiritually is an understatement. feel very very alone and fearfull of the treament and my future. at the moment the rheumy agreed that i dont have to take the drugs but they will monitor my lupus and my organs to ensure i dont suffer and start treament if needed. i just cant get a grip on the chemo drugs and the huge side effects etc..
anyway went for my check up and waited a very long time. my name was called by someone i have never seen before and i asked where my doctor is,
she said i was not under her anymore. i was gutted. i had got used to my dr and to be told that i am not to see her anymore made me so upset. that i was crying.
i asked a nurse he just shrugged his shoulders and walked away.
i am thinking because i asked for a second opinion my origional drs dont want to see me.this new one was telling me info that did not relate to me. she must have been told at the last minute.
then she tried to get me on the chemo drugs after i had agreed with the other drs that i dont want them as yet.
i walked out and now i have no rheumy or no hospital. i feel very vunerable and dont know where i stand anymore. it has been very hard for me being uncomfortable all the time but i had foolishly thought that they would understand