Third visit today to my GP regarding my diagnosis of PMR . My ESR levels are down. and I am pretty much in control of my pain. Reducing at 1mg a month.
After gaining so much from this site I went armed with my list to the Dr.
We discussed that fact that I have stopped Alendronic Acid because of my concern of side affects. GP was happy to arrange Dexa scan and ABPI to test blood flow through my arteries as I had concerns re pain in my legs.
I told him I had gained so much from reading this forum and he asked for info so he can have a look for himself.
He said that it was good that someone was interested in finding out about their illness and try to help themselves.
I am so glad I have this Dr. who wants to listen and discuss how we should progress. There are so many that "know best". The fact that I have imput on how I want to proceed with his help has given me such a lift. Cheers Dr O
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Chrissy1953
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It's good to know that some GPs / family Doctors actually listen to their patients, treat us as intelligent people, and not just as another 10 minute slot to tick-off in their busy, Performance Managed schedule.
The moral of the story (with GPs and also some alleged 'Specialists')? As you say, be armed with the relevant, researched facts and evidence, prepare your 'proposition' regarding suitable treatment options (or otherwise), be assertive (not aggressive) and clear about your needs from them in your personal health context. And, don't be fobbed-off by a Doctor (or even a supposed Specialist) who is clearly not at the top of their knowledge of PMR / GCA.
This is where, and why this forum is so valuable in its wealth of expertise and experience - credit to all who tirelessly contribute to it for the benefit of others.
Hi Chrissy - a good result and, as Mark has said, it's good that you can get a decent response from a caring GP, 'tho' we sometimes seem to have to tread on eggshells to achieve it!
Coincidentally, I also had an appointment yesterday with my GP, albeit by means of a telephone consultation (which you can only book on the day, by ringing the surgery at 8:30am - it drained 50% of my phone's battery power before I got through....) - don'tcha just love modern medical practice !
However, it was worth it - agreed to prescribe 1.0mg Pred tablets in order to more easily follow the DSNS reduction method (albeit, he let it be known that he considered this 'crawling to the finish line'). Agreed to arrange a Dexascan so that Alendronic Acid might prove to be unnecessary and also arranged full set of blood tests so that I can temporarily suspend Statins, as I didn't want the Pred to push me closer to the diabetic edge !
Nevertheless, with a bit of asertiveness (not too much!), I felt that I can now keep to the current dosage of 7.0mg Pred until after my (postponed from a year ago) to the USA. In fairness, he was helpful in getting last year's abortive travel costs refunded in full...!
Crawling to the finish line is to achieve not falling off the edge and having to be sent back to the start! Can HE tell you how far it is to go? I think not - even if he thinks he can! This isn't a track on solid ground - it's like a high wire act with the only accesses being rather restricted...
Thanks Markbenjamin57 and Rokerman. Treading on eggshells is correct. I used to work for a Dr. So maybe that helped on how to treat them . But they are the Dr's and that is why we go to them. We wouldn't tell someone who's passed their test how to drive would we, I'm not letting my husband read that bit 😉 It was just refreshing to have one that wanted the same as me and was willing to listen.
. We have so much information at our fingertips now we must make use of. It's our lives and bodies after all.
For me it was trying to understand this disease and to try to find out what may have caused it. When you're told that PMR is hard to diagnose.. Is it stress ,trauma,previous illness,flu injection, and on and on as so many people think it could be.
When i have excluded these then like a Miss Marple I'll delve further as I need to know more about this and want all the info to help me get to the end. That is where this site comes in. Reading other posts and the help and information is invaluable and that was how I was able to present my case to my GP. He has arranged tests for my "I think it may be this " so I am more than happy. ☺☺Keep on posting you amazing people. It's because of you I could take the steps I have 💕Happy valentines day
This 'Doctor / Patient Relationship and Trust' issue seems to come up increasingly often here (and who knows where else?!). On one hand, many patients have (or want to have) high respect for and trust in their Health Practitioners (abbreviated here as 'HPs'), for good reasons. On the other hand, it seems that the expertise and / or Bedside Manner of HPs sometimes falls short of those expectations and is rightly questioned or mis-trusted by their patients as a result.
Maybe this is due to a more 'informed' (sic), digital world where in many cases the Patient can access and check-out online what the HP has said or recommended? This forum is a good example - so many of us (including myself) seem to seek a second opinion from a resource of relative strangers (no offence intended to the trusted experts here!) who, collectively, present the bigger picture and a provide deeper perspective (but that's for those of us who are digitally 'connected' - how many aren't?).
Of course, us Patients, too, can have inaccurate perceptions of our healthcare needs and appropriate interventions (also gained from the internet, for better or worse?) - and I'm certain that many HPs, themselves, battle with these sometimes wildly inaccurate misconceptions in some of their patients from day to day. Who here would swap jobs with a busy HP / Family Doctor who is often Performance Managed up to the eyeballs and under pressure to 'do the numbers' / in terms of processing Patient cases according to a ticking clock (not to mention erring on the side of caution to cover their backs in an increasingly litigious society)?!
The Bottom Line in this conundrum..?
As I've suggested before, Knowledge is Power - and Patients' style and effectiveness in their 'presentation' of themselves and their circumstances, symptoms and needs seem to be increasingly important in helping (or maybe guiding?) their HPs in negotiating the path to an optimum 'solution' for all parties. A little empathy for busy, often stressed HPs can perhaps reward itself with more of the listening and attention that we need. That said, it's worrying to hear from many here that some HPs (and even Specialists) are just badly informed and / or worse still don't seem to give a **** about their patients' health and welfare. But I guess that's nothing new...
Conclusion?
Sometimes, for better or worse, we need to gently but firmly advise the 'Experts' well / accurately enough for them to advise us appropriately in return. Yes, it's not what we expect to have to do, but I'm afraid it's a sign of the times. A well-informed, researched evidence-wise and assertively (not aggressively..) presented 'case' at least gives us a chance of getting the best possible hearing - and suitable advice or treatment (or otherwise). Don't forget, the HPs are only Human too, and I'm certain that the vast majority want to get it right for themselves and their patients. I live in Hope...
Ok, that's it. My brain hurts now. The wine is open. Dinner is in the wardrobe and my shoes are in the oven. Brain Fog... what Brain Fog?!
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