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Doctor Rage

Posted , 6 users are following.

Kdemers
Kdemers

I did not join in the last discussion about response to doctors. I know for sure that my doctor does not care what I say to him. When I was first diagnosed with PMR my CRP was high and my Sed elevated.  Then as time and Prednison dosages went by my blood work only spoke when I had a bad flair, and now never changes.

  All my symptoms went to Jaw, head, cluster headaches--GCA--very bad.  Actually went on Prednisone up to 80mg.  That all was in 1013,14,15.  I finally let myself have the temporal biopsy even though I knew it would reveal little.

What I did? How I coped?

Since I go to the Pacific NW in summer I found a rheumatologist near Seattle. WA.  He is wonderful, he listens, and he says-"forget the blood tests just tell me what is happening.  

The rehaumatologist I have in the SW--Arizona, thinks I make up half of what I say.  I finally told him I know what is going on and when I have a flair.  I think he cooperates with me because he knows I have a 2nd doctor.

I have also received help from a Neurologist doing research in Colorado.  He said take antiviral pills for the GCA and try to reduce prednison.  Dr. in NW spoke with him and agreed to let me try.  I have not had GCA symptoms for almost a year now.  But I have PMR flairs every time I try to reduce Prednisone.

My only point in this post is that one needs a doctor who listens and who knows the disease--or at least wants to---and yes, keep reading these posts as so many people have knowledge.  Always read what Eileen says--she is really on top of it and every time I read one of her replies I want to yell "Yeah!" and "Thank you for listening and sharing wisdom and experience."

I want to change doctors in the SW but he is used to me insisting on myself and what I experience--I find it a challenge.  I am close to reaching out to anyone in my area if they need help--not sure just how to do this.   

Hang in there everyone.

 

2 likes, 16 replies

16 Replies

  • EileenH
    EileenH Kdemers

    Posted

    There is a US website which is attempting to get US people together - the link is in the first post of this thread:

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    although I have no idea how it is progressing.

    There is also a Canadian one - although I realise your experiences are less valid in another country- and I know there is a small group of people around the Vancouver BC area. I'll be meeting some of them at the end of June! Not a million miles from Seattle to Vancouver? 

    What a contrast in doctors though - like the sound of your northern one, I'd have sacked the other long ago! But at least he provides the tablets...

    • Kdemers
      Kdemers EileenH

      Posted

      We go to Vancouver the end of August, but it really is not that far away.  Keep me posted.  Thanks you for the link.
    • EileenH
      EileenH Kdemers

      Posted

      As far as I know there are plans for a few of us PMR-ers to meet in Vancouver on June 24th/25th, but not sure of the exact details yet. I just know one lady from "up in the arctic" has booked a hotel for June 24th which is one of the days we are in Vancouver during our "tour". 
    • sheila28713
      sheila28713 EileenH

      Posted

      Hope we are still going to meet in Calgary on June 18th, Eileen!  I have it in my calendar. Looking forward to it!
    • lodgerUK_NE
      lodgerUK_NE sheila28713

      Posted

      Enjoy the blonde bombshell, who dropped into my life 8 years ago.

      Serendipity.

    • EileenH
      EileenH sheila28713

      Posted

      We have our flights from Chicago to Calgary on the 17th, arriving heaven knows when at night  - there is a 4 hour window between the flight from Munich landing and the flight for Calgary so I hope to goodness it works! 
    • sheila28713
      sheila28713 lodgerUK_NE

      Posted

      Oh, so Eileen is a blonde Bombshell!  I had no idea. haha. It will be easier for me to find her now. I am very excited to meet this woman who I have learned so very much from in the month that I have been on this forum! Wish I'd joined two and a half years ago!

      Yes, it feels very serendipitous. 

      Sheila

    • sheila28713
      sheila28713 EileenH

      Posted

      I hope the flights are all on time. You will be very tired. I just did the overseas  flights in September so feel for you re - the jetlag involved. 
    • EileenH
      EileenH sheila28713

      Posted

      I was fine after the trip back from China to Europe - which was similar as it was a 10+ hour flight followed by a 4 hour drive home. I can usually sleep anywhere - even on a plane...
    • sheila28713
      sheila28713 EileenH

      Posted

      What a bonus to be able to sleep on a plane Eileen.  I wish! That would sure help with jetlag. Sounds like you travel quite a bit so it's great that you adjust to travel in different timezones so easily.
    • EileenH
      EileenH sheila28713

      Posted

      We have a bit of a fight - when we get there/back I just want to go and sleep when I'm ready and if I wake up, then I wake up. OH gets in such a sweat about not sleeping at the normal times.

      I assume it's a man thing and is not unconnected with the fact men never do a lot with the kids when they're small. David used to say "Oh, she slept through last night, that's good" - when I'd been up at least 3 times for one reason or another...

    • Silver49
      Silver49 EileenH

      Posted

      I envy you being able to sleep on a plane. I've tried but I just can't. OH can sleep on a knife edge. In fact I found him sleeping over the kitchen table yesterday.
    • EileenH
      EileenH Silver49

      Posted

      Mine goes to sleep in an office chair in front of his computer...
    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      My sleeping pill is the TV - I am guaranteed to drop off - so I always put the recorded on - as I got fed up of not seeing the end of a film or programme I was really interested in. 
  • sharon21683
    sharon21683 Kdemers

    Posted

    Hi Kerry, i
    • sharon21683
      sharon21683

      Posted

      Hi Kerry,

      I live in Vancouver WA. and have had PMR since April 2015. I have been on this UK site for over a year and it doesn't seem to matter where the people live we all have the same disease. The information I have gotten on this site has been wonderful!

      Maybe it's a NW thing but I also have a Rhumy here in Vancouver that has been great. She is very familiar with PMR and is allowing me to taper as slow as I need to. She said I'm the one who knows how I feel so do what I need to. She predicted I would be off Prednesone by the end of summer... Let hope!😃

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