my rheumy has passed my file to anather dr without informing me

[tintin49]

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

[Riverbird]

So sorry to hear how you are feeling, and how your change of doctor has happened. Although you feel very alone at the moment, remember that you have the members on this website to support you, many of whom are going through the same thing. I have been moved to three different consultants over five visits! I know that two of these moves were caused by

the consultants moving hospitals and the rest by reorganisation of patients lists, and it is too expensive for the hospital to write to every patient to tell them. So we just turn up for our appointments and no one says anything and we see a strange face! I have now seen a different consultant (only one was a Registrar who was brilliant) at every single rhuemy appointment I have had. Three of these have been excellent but the others not so, being in and out in two mins. However, I do manage to see the same consultant in Haematology each time, bingo! You do have the right to ask for a second opinion via your GP. I did, without any problem. The biggest problem I find is the lack of communication, which makes you feel no one cares and can leave you feeling tearful and very unhappy. If only people would take two minutes to explain - why things have happened in your case. It is probably nothing to do with you asking for a second opinion, unless the consultant felt your relationship had broken down because of it and you would be better with someone else. Unless you told them you did not want to be seen anymore?? you will still be under the hospital. The best advice I can give is to go and see your GP, tell him/her what happened, that you are in pain all of the time and ask their advice as to the next step. He should eventually receive a letter from the hospital anyway following your visit but some letters take ages. Hope you can get some help very soon and take care.

[tintin49 in reply to Riverbird]

thank you riverbird for taking the time to write to me. i have been feeling quite awfull generally and this was just anather thing to add to my misery. my dr was there and so the consultant i just feel that they are fed up that i dont want meds etc..i will be getting some counselling that my rheumy suggested as they think my mood is low i agree that its all a bit much for me...

i do enjoy this site all the advice and support is invaluable. thanks again i feel a lot better for reading this

[Riverbird]

Hi tintin49,

I too declined the medication and the consultant luckily agreed with my decision. I can just about cope with things at the moment and want to leave it in reserve, bearing in mind possible side effects and some allergies I have. It is after all the patient that has the choice and the decision on this, taking on board advice from the Consultant (after all that is why we go to see them in the first place) and whilst they sometimes may not agree with you on that, it is still your choice to make and this should be respected. In the meantime, if you have decided that you do not want certain medication, being monitored is the safest and best thing, until you need to call on more help. It is very good they are doing this for you, so hope you feel you are not alone. The biggest problem we all seem to face is that people think we look fine, and we think they do not understand the pain we are in or the extreme exhaustion.

Think this blog helps us all a lot at times as we have fellow feeling for each other. Take care.

[tintin49]

thank you i will contact the gp to arrange to have my regular tests this as you have said is an important part of me looking after myself...

thanks again

[nicky1234 in reply to tintin49]

hi, just have to say please stick with the new doctor as you know lupus is unpredictable

and you need to monortered.

my lupus affects my central nervous system and can leave me sometime's depressed

i am on anti depressants all the time to help with this.

xx

[tintin49]

thanks for your advice nicky i was upset that a dr that i had began to trust and get used to just dumped me..this dr has a different approach i just wish i did not need any of them

[sarahroly]

Hiya,

Believe it or not I have just had the same thing. I have been under my rhuemy for the past 6 years, then I go for my normal 6 month check up, only to be told, I now have to see a different rhuemy coz mine now only works out of Brighton n doesn't cover Haywards Heath

Take care x

[tintin49]

my one saw me sitting down outside her office for an hour and a half waiting. personally is just plain rude. she still works there. the new one did not even read my file so was guessing information on me. not impressed