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RETURNED HOME FROM VISIT TO CHAPEL ALLERTON

Posted , 8 users are following.

margaret22251
margaret22251

Saw Dr Sarah Bingham, what a lovely lady.

Now after many disscusions and i might had she knew all my previous history even tho we had never meet before today, she has come tp the conclusion 90% sure i do not have PMR, but have had some blood tests done, yellow bottle, green bottle and brown bottle. Also was sent for X Rays on my spine and neck, everyone has been brilliant i must say.

She has looked through the notes regarding (forgive the spelling) the geonodes, which she says his holes in my hips which cause curving in the hip joint, and she thinks this was not PMR related, 

She also thinks my neck and spine is the problem, and so she wants me off steroids as she said some of my problems like eye pain, headaches and all the earaches are side effects of the pred not PMR.

I do hope she is right, as i would hate , as much as i do not like being on pred she is not taking me off for all the wrong reasons, as GCA is lurking around i do not want it to be a problem later on.

So she is happy for me to do the DSNS method at 1mg reduction, and i gave her a copy of it Eileen, as she said that seems better than the one she uses for her patients.

So some good has come out of today.

I would appreciate your feedback on this please, and your comments regarding your thoughts about PMR, 

Thanks Mags

 

1 like, 19 replies

19 Replies

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  • EileenH
    EileenH margaret22251

    Posted

    When the PMR diagnosis is in doubt for any reason at all then it is perfectly fair to ask for the pred to be stopped so you can see what happens. It sounds as if she has been very thorough - and I know Dr Mackie feels that there are things that happen that are easy to confuse with PMR that should be looked at separately and dealt with in the best way for them - then you see if anything is left that could still be PMR. I know that having the back and neck problems that I had sorted out by other means has meant I have been able to get down to a far lower dose of pred - because I did also have PMR. 

    But the most important thing is that you have a doctor who you are able to relate to - because that is really important in sorting out what exactly it is you have. When have you to see her again? I'm sure that if you have any problems in the meantime you will be able to contact her - so you can tell her if there is any increase in the headaches and stuff as you reduce. If it is the pred they should get better not worse.

    I'm looking forward to hearing what she finds out.

    • margaret22251
      margaret22251 EileenH

      Posted

      I have to go see her in 4 months time when hopefully i will be on a lower dose and then she will see if there are any other symptoms, and of course i have a good doctor who i can talk to and see anytime, i feel very lucky to have seen aomeone who knows what they are doing.

      Thank you for your reply.

  • Kassie_beetle
    Kassie_beetle margaret22251

    Posted

    Hello Mags

    Have been following your posts will be very interested to see how things go. Glad to see that you have a Dr taking care of you who appears to be very caring and knowledgeable as well. Keep us posted

    Kathy

    • margaret22251
      margaret22251 Kassie_beetle

      Posted

      yes as i said i feel very lucky in getting to go to Chapel Allerton and getting someone who understands.
  • Juno-Irl-Dub
    Juno-Irl-Dub margaret22251

    Posted

    Margaret, I'm delighted for you that your consultant's visit was both really helpful to you and that she herself seemed both very knowledgeable and supportive. I hope you can keep up the contact with her after your clear diagnosis. You can now start to feel a bit more positive about yourself and whatever treatment you may need. Keep in touch.  J
  • pauline36422
    pauline36422 margaret22251

    Posted

    oooo mags bet that makes you think.  but she must  know    what  she is tallking about. but a bit concerning for you.   which would you rather it  is but  keep   us  informed on the  forum  whats  happening to you     good luck
    • margaret22251
      margaret22251 pauline36422

      Posted

      Hi Pauline, yes i feel better for going i was so surprised she knew so much about me and what i have been going through this last 2 years, she knew about the cancer scare and she said that things can mimic other things into thinking its one thing, but not if you understand me, i seem to think that Eileen once said this on this forum as well.

      I can recommend anybody to go there, so friendly and down to earth never po poed anything i said or asked.

      Feel aprehensive but now know somebody will get to the bottom of things,

      Take care and will keep on this forum as i feel as if i have made some friends in you all.Mags

  • MrsO-UK_Surrey
    MrsO-UK_Surrey margaret22251

    Posted

    Mags, that appointment certainly sounds like it was well worth waiting for.  I know another lady who travels miles to see Sarah and returns relieved and more relaxed following every appointment.  If it isn't PMR, then hopefully she will get to the bottom of what it is.  I must admit I was always surprised that you were able to walk so many miles especially in the early days following diagnosis if this was in fact PMR.  Fingers crossed for you. 
    • margaret22251
      margaret22251 MrsO-UK_Surrey

      Posted

      Hello Shirley, lovely to hear from you, yes i was surprised by the outcome, but fingers crossed, my only worry is the GCA/PMR if it goes undetected but i do trust Dr Bingham she was so lovely filled me with confidence.

      Many thanks take care. Magsbiggrin

    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      Different Sarah folks! Sarah Bingham, Sarah Mackie - both rheumatologists!
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Ah!  I did notice Mags said Sarah Bingham but thought I had seen Sarah Mackie referred to in previous discussions between Mags and others.  Very confusing if there are two Sarahs, both rheumies and both in the same area, especially if both are so good.
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      I imagine they both work in the rheumatology clinic - but Sarah Mackie is an Associate Clinical Professor and Honorary Consultant Rheumatologist so I imagine doesn't work full time in the clinics. She works with Ann Morgan, Professor of Molecular Rheumatology and Honorary Consultant Rheumatologist. Director of Research and Innovation, Leeds Institute of Rheumatic and Musculoskeletal Medicine. The team is quite a close knit one and almost all of them sing from the same hymn sheet when it comes to PMR and GCA.

      There are 4 hospitals in the Leeds Trust - not all doctors work at all the hospitals and some are "just" rheumatologists, Ann and Sarah B not only do clinical stuff, they do a lot of research and teaching and that takes up time.

    • margaret22251
      margaret22251 EileenH

      Posted

      Dr Sarah Mackie was there yesterday i think as her photo was on the same wall as Dr Bingham, but i might be wrong.

      Whatever, Dr Bingham was brilliant i do hope i see her next time i go as i have some questions i would like to ask her.

      I do know she works at other hospial, as it said this on the walls.

      Compared to Dewsbury hospital,( sorry if i offend anyone ,) everybody knew what they were doing and it was soooooooooo clean.

    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Have heard both Professors, Sarah M and Ann, talking on PMR/GCA , but hadn't heard of Sarah B.  If you have to have PMR/GCA, it sounds as though you couldn't be living in a better area than in Leeds - very rare to get a whole team in one Trust, as you say, singing from the same hymn sheet. 
    • EileenH
      EileenH MrsO-UK_Surrey

      Posted

      The top-down effect - if the top is good it spreads to the rest of the department. 
    • MrsO-UK_Surrey
      MrsO-UK_Surrey EileenH

      Posted

      Not so sure that applies here in my local Trust, if the two rheumies I have experienced are anything to go by.....they're worlds apart!
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