PMR Diagnosis - Doctor not listening?

Welcome @loyd1957, That is a good question that I'm sure a lot of members have some experience and might have some suggestions. I was fortunate enough to have a primary care doc that did listen and gave me a referral to a Mayo rheumatologist. We added a little to your discussion title to hopefully bring in members with experience to share what has worked for them.

Have you tried to seek a second opinion or get a referral to a rheumatologist who has experience with PMR?

My internist did listen to a point and ran test for polymyositis and since numbers were normal in C-reactive protein and creatine kinase he thought rather my autoimmune Hashimoto's. We have run RA bloodwork and always within normal range. I am at wits end on painful muscles in and around hips, back, butt, shoulders, thighs and calves. Almost feels weak. I should probably see if he would be open to Rheumatologist. Thank you

I wouldn’t say my doctor wouldn’t listen, she just didn’t know. She was young and the only doctor I found that was taking new patients. My doctor had retired and I hadn’t really needed one for several years. She sent me for X-rays, MRIs, PT, had me taking massive NSAIDs. I also had acupuncture (she didn’t know about PMR either). The acupuncturist clued me in to another doctor whose PA would see me. She didn’t know about PMR either but looked at my hands and sent me to a rheumatologist. He diagnosed me in 5 minutes and put me on prednisone which worked wonders. Glad I didn’t stay with the first doctor!

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.

If your internist hasn’t referred you just ask for a referral.
If he doesn’t consider it worthwhile then you will have
to find a rheumatologist for self referral.
Do you have access to a university clinic?

"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."

I had done a lot of internet research on my confusing symptoms and sudden extreme level of disability before approaching a Doctor at my local medical centre that I knew was intelligent, up to date and a good communicator. I listed down on paper when each symptom started, what meds had helped and the pattern of symptoms daily and the fact that my mother had similar symptoms for 20yrs leading up to her death. I then asked if I should have my inflammatory blood markers checked ? I immediately had a blood test at the medical centre, left his office with a script for Prednisone, and a referral to a Rheumatologist. The blood results confirmed a major inflammatory disorder and he was on the phone to me the next day giving further instructions on the Prednisone dose and making sure I was booked in to see the Rheumatologist ASAP for further testing. Without the preparation and research that I did myself, I'm pretty sure it would have taken several more visits to get anywhere, I probably would have been referred to an orthopedic specialist for steroid injections.

Hi @loyd1957, I had symptoms of PMR for 6 months, basically incredible pain and stiffness from the neck down, but my inflammation markers weren't high enough for my PCP to diagnose it. I didn't get diagnosed for another nine months. By then I had Giant Cell Arteritis. I remember being so weak and ridden with pain I couldn't push down the water handles of a sink in a public restroom.
PMR is very responsive to prednisone. In a medical textbook (Goldman &Cecil) a trial dosage of prednisone is suggested if the physician isn't sure about PMR. If there's sympotomatic relief, it's most likely PMR. Maybe you could ask your doctor to prescribe prednisone at the usual dosage for PMR (usually 20 mgs) on a trial basis.
I wish you the best. The pain of PMR is not like any other pain I experienced in my life.