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PMR Diagnosis - Doctor not listening?

Polymyalgia Rheumatica (PMR) | Last Active: Oct 12 6:13pm | Replies (8)

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@jabrown0407

Have you asked your doctor if it could be PMR? It took a year to find a doctor who could diagnosis me and that was March 2020. The second time I saw her in April 2020 she told me she was stepping back from practice due to Covid. Another 6 months to see the second Rheumy. My Sed Rate and CRP were both over 100. Long story but in the end I agreed to prednisone post my bout with Covid when my inflammatory numbers went even higher.
Do not give up - plus does your insurance require a referral? I have done online research, found the doctor I want to go to and made appointments because I don't need referrals. I have also asked my PCP for referrals and recommendations.
You should feel like a team member with your doctor, not a "do as I say" relationship. One approach that has worked for me is to ask why the doctor has eliminated something - ask them gently - Like "Please help me understand why you don't believe it's PMR. " Treat them as a valued team member. Practice the conversation and go in with notes. I actually send my doctors MyChart notes prior to my appointments with my questions - it is useful to help guide the appointment.

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Replies to "Have you asked your doctor if it could be PMR? It took a year to find..."

"One approach that has worked for me is to ask why the doctor has eliminated something - ask them gently - Like "Please help me understand why you don't believe it's PMR. " Treat them as a valued team member. Practice the conversation and go in with notes. I actually send my doctors MyChart notes prior to my appointments with my questions - it is useful to help guide the appointment."
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This is very good advice. I don't think doctors like it when people listen to "internet experts" contrary to the advice given by a qualified "medical professional." I admit access to the medical professionals is sometimes limited and "professional patients" on the internet like to fill the void. However .... content on patient forums do not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

This is especially true when you consider doctors are the only ones who are licensed to order and interpret diagnostic labs, scans and a variety of medical tests. Writing a prescription for long term prednisone for PMR is serious stuff and shouldn't be taken lightly. People shouldn't be adjusting their dose just because someone on the internet told them to. It is better to tell your doctor that the pain was severe and you didn't know what else to do. Don't say, "Someone on the internet told you to increase your dose."

I once read a claim from a professional patient on a popular forum that they were "entitled to know" things about PMR because of having been diagnosed with PMR/GCA and because they took prednisolone for a very long time. What struck me as being strange was they claimed to know things which the research says are "unknown and more research is needed."