Trust your instincts

I have been seeing the same rheumy for almost four years and a year in he decided that I didn't have PMR as my ESR was normal. He then revised it some months later and agreed that I did have PMR with a touch of Fibro. thrown in.  Last month he again told me that he thought I did not have PMR but it was  'all in my mind' and I was using the steroids as a crutch.  Telling him I really didn't want to go on looking like this...total loss of identity, 4stone plus etc made no impact. So.......

today I saw a different rheumy, recommended by one of the wonderful people  on this forum and I think my life is about to change. We already have a plan of treatment and have taken the first steps and I am feeling more positive than I have felt for years.

Thank you everyone, this has proved that  if you feel you are not making progress with your treatment....ask to change........

I owe you all a huge debt for your help and advice,

Ida

7 Replies

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  • Ida, I'm so glad the appointment went so well for you today but not at all surprised - after all you are the second person on this forum today to sing the praises of the same rheumatologist!  And in case you aren't already aware, he's coming to talk to the group in October, so don't forget to book your seat for that one!  Fingers crossed it's onwards and upwards for you now, Ida.

  • So glad! Good luck! 

  • Dear Ida-June, what a famous saying " it's all in your mind ". I was told that by my GP and a Rheumatology team at the beginning of my PMR journey a long time ago.. Also they hinted that I took the steroids for the sake of it ..as you say loss of identity with the weight gain,moon face etc Who in their right mind would take more than they needed. It appears you are with the same Kind and Caring Rheumatologist as me and I hope now things improve for you with his support ..I told him to his face a couple of weeks ago that he is the only one of my medical team that I trust .I always come out of his appointments feeling more Positive about myself. Best wishes  trish 29

  • I agree with all the posts,  am so happy to hear a good news story.  And image anyone in their right mind wanting to take Prednisone,  how ludicrous!   I had a wonderful rheumy but lost her and now find myself in charge.  Trying desperately to find someone knowledgeable and concerned to look after my GCA.

    Hope all continues to go well.  What a difference it makes to your outlook and subsequent healing.

    Cheers

  • Ha - don't need to ask who THAT is do I?

    To be perfectly honest - aside from the fact no-one REALLY wants to be on pred - I don't care what label they give me. Call it what you like - but if a moderate dose of pred gives me my life back and other things don't that will do fine. Why tell you it is fibro if pred helps? The consensus is that there is next to nothing that works with fibro - so if pred works surely that is a fair signal this isn't fibro? And to the best of my knowledge nor does pred cure delusions...

  • Hi all can someone please say who is this caring specialist then?

  • Glynis, unfortunately he is a long way from you there in Lancashire, being based at a hospital in Surrey here in the south east.  I know PMRpro recommended an excellent rheumy at a hospital in Leeds, still not too close to you but well worth a visit if you have a day to spare.  

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