Surprised and Uncertain: Should I get a second opinion?

Thx for all the great info nyx.
The "doc" I referred to is a rheum. She is really excellent and very smart, but her head is in June, when she'll be leaving medicine to spend more time with her very young son. I don't blame her, but it's a huge loss.

I'm very frustrated because I need to find someone who will run all tests that rich people get to find out what the hell is going on. And no one wants to do that. So many people are diagnosed by whether or not pred works for their bi-lateral, sometimes even uni-lateral pain. I can't take steroids and need someone to work with me to try LDN or something else that might help and is gentler on the mind and body, but first of all, I want a better diagnosis. Just because pred works does not make ALL OK.

I was not tested for Lyme's, would be glad to have it at this point. But I don't think I do from the description. It seems like PMR to me and I don't want to argue with docs about it. Every single medication has horrible side effects, even Advil! By the time you reach 70+, most of us have some issues that will be affected by almost any medication. I'm looking for the best treatment with the least side effects. I have too many contraindications to take pred.

I don't recall if I said this or not above, but my last appt with the rheum, after my US, she said she didn't think I had PMR. But I'm pretty sure I do. She had no answers for me, like I said, she's out the door. Said to switch from Advil to Xtra Strength Tylenol. The backs of my knees had been painful for weeks and I told her. She looked and said I had large Baker's cysts, but draining wouldn't help for long, neither would cort shots. My kneecaps, at this point, also hurt and I am afraid they are being destroyed. Read that they can begin slipping or something from these cysts.

Anyway, I am frustrated and trying to find help, but these days, it can be next to impossible to find other than a robot. And if I could find one that could help me, that would be awesome.

Wishing you the best.

I have yet to be diagnosed with PMR but seem to be a poster child. My rheum left the practice of medicine at 38 yrs old. Says a lot. Anyway, after limited labs and an US, she said I wasn't sufficiently inflamed to call it PMR. Suggested PT. But what of this pain? And these huge Baker's cysts that are so debilitating and causing my kneecap veins to bulge? She suggested Tylenol. I realized then and there that she was done. Next rheum appt in same office is mid-June.
In the meantime, I have an appt w/a doc that my daughter uses for long covid. She is a gem, medical but also interested in functional medicine. She is in NYC, and has been such a gift to our daughter. She spent so much time and effort w/her and has put her on LDN, micro-doses at first. It has really helped. Because I can't take steroids for various reasons from heart issues to crippling anxiety, I researched LDN for PMR and found basically only positive things. Yes, it appears it can upset the stomach and that bothers me because I have reflux and a very very sensitive stomach and esophagus.
At any rate, my appt w/this doc is coming up Tuesday (telehealth, I'm in MD. )
I'm not sure how to approach it. If I tell her my whole story and she suggests labs and other tests, maybe even goes right into prescribing LDN, I'm not sure whether to go ahead with it and not see the rheum down here or not.
Am I overthinking this?
Any feedback would be appreciated. Thank you.

I would use whomever your comfortable with getting a diagnosis. Just me. But you need to make sure your getting the correct treatment. So many things can act like PMR. My Dr. is pretty good but she would not treat me without a Rhumy diagnosis. There are a bunch of tests to rule out other things. There are newer drugs like Kevzara and Acterma designed for PMR. LDN might work I dont know. Seems like it might be better for RA. RA has various drugs to help with symptoms. The one "cure" for PMR symptoms has been Corticosteroids. Those come at pretty high risk of side effects and addiction. They stop the pain immediately but if something else works, go for it. You might keep your appointment. They are hard to get and maybe you will be pleasantly surprised. Here is a generalized description of PMR.
https://www.uspharmacist.com/article/polymyalgia-rheumatica-a-severe-self-limiting-disease

Thank you tuckerp. I've read that article more than once...it's very good.
I think I will keep my appt and stay on this side of it....who knows what she may or may not say. I tend to get too wrapped up in possibilities instead of just staying in my seat, so to speak and letting them drive. In the end, it's my choice unless/until I'm unconscious or mentally unavailable for some reason or another.

I can tell you from experience if your suffering with PMR pain without any medication it drives a huge urgency on your part. Most of us spent months trying to figure out why we couldnt get out of bed. Call to make an appointment and they say we have an opening in 8 wks. No BS. I want something this afternoon. Your primary care may get started pulling blood work. At least you have things started.

Hi @glinda47, I merged your new discussion to your previous one here:
- Surprised and Uncertain: Should I get a second opinion?https://connect.mayoclinic.org/discussion/surprised-and-uncertain/

I did this so members have more of your background to help support you and the decisions you're facing.

I would keep both appointments for now because rheumatology appointments are so difficult to get. Actually, I’d probably keep both anyway. You may be able to start LDN if that’s what you really want to do and see if you have improvement. Even if it works though, it doesn’t necessarily rule out PMR.

Assuming you continue to have joint pain even after starting LDN if you do it, it would probably be best to consult with a rheumatologist because they may be best positioned to rule in/out other potential diagnoses. LDN might work for PMR (I take LDN for fatigue) and while there’s not much “negative,” case reports are very few and far between (if any, I’m not sure) of people miraculously being cured of autoimmune conditions. Most people I know who take it use it as adjunct to whatever evidence based treatment exists for their condition (PMR, IBD, RA, etc.) My father has PMR and takes LDN for fatigue, and so do I. I also have seronegative spondyloarthropathy, POTS, HSD, and Long COVID. The LDN doesn’t seem to do much if anything for pain associated with those conditions, but it’s hard to take it all apart.

I take Humira for my inflammatory arthritis, and I definitely would not even consider swapping it out for LDN alone. But I have an established diagnosis.

As someone mentioned, if you absolutely can’t take prednisone, there are alternatives, but presumably you’d need an established diagnosis to get that approved through insurance or for a rheumatologist to be willing to take the less common route.

You could probably see both providers if you feel they’re both a better fit for you. I have a rheumatologist and my PCP is a DO with a more integrative approach (she prescribes my LDN.

PS I was also concerned about potential stomach upset with it, but I had no problems with that as a side effect.

Yes, I've seen a rheum and have a couple of other appts coming up.
This is a mysterious and painful disorder, physically and mentally.
Have had labs.
Take care and thx for sharing. Hope your pain is mitigated and you aren't suffering from side effects. And also hope remission is coming soon with no drugs necessary.

Thank you, Colleen.