Newly diagnosed PMR, still in shock - fighting it, sharing, learning

@kjoed53
I wish that was my situation. My surgeon said I had 2 separate issues and because of what arthritis had done to 3 of my neck vertebrae, he suggested the surgery and then handle the inflammation. My right hand issue is numbness of my middle finger and the inside of my ring finger but not the outside nor my little finger, index, or thumb. There is also sensitivity of the inside of my right hand's wrist. This has been a constant and I think it involves my vertebrae. The worst part of all of this is I should have gone to medical school... but I didn't. I'm relying on those who did go to medical school. I admit, I do have trust issues. 🙄

@geve
If you have trust issues then I'm guessing you went for a second opinion. I was born with two cervical vertebrae fused. I have severe arthritis, as well as spondylosis and stenosis. The first neurosurgeon I saw within the practice was ready to do extensive surgery but after discussing the entire process with me, he decided to have the practice leader take a look first. I've had back surgery before and I'm in no hurry to have anyone touch my neck until it's absolutely necessary. He saved me from that.

@geve
Golly. It strikes me how many of us have neck issues as well as PMR. (I have had cervical spinal stenosis for several years now; numbness in fingers and toes is part of it. It hasn't gotten worse.) Primary said I could have surgery. I said I'm not ready for that option and he actually agreed. (I keep reading that the secret about spinal surgery is that it does not work.) I hope that you recognize that if you go to a Surgeon, of course they want to operate. That's how they make their money; you can always find a surgeon who wants to operate! That doesn't mean you necessarily should. I personally think that neck issues are Complicated - can be from so many sources, combinations of sources, and we should all recognize that surgery may not be the immediate answer; maybe save that option for when Nothing else works.... I agree with all of you who are suggesting that this person postpone surgery until they, their primary, their rheumatologist, etc. are all on the same page..... Too serious to just go quickly into something as serious as neck surgery.

I've had 2 neck surgeries with fusion. One at C4-5, and at C5-6. So two levels are stuck together one on top of the other.
I agree with Bindie (comment above), about how neck surgery especially is something to only do at last resort. My C4-5 disc ruptured from a fall down about 9 stairs in our home not long after moving into a split level home. Carpeted stairs. Heel of slipper went out from under me and it was down the lower level of stairs on my left butt. I grabbed my neck. Not my butt. That led to trying all kinds of treatments to try to stop the pain, headaches, nausea, and sometimes vomiting but nothing did, so I had surgery. It did fix all the issues I mentioned above but creates another problem. When you fuse a vertebrae to the one above or below, you create the conditions for yet another level to have problems, bulging discs, etc, and even instability.
And yes, surgeons are always going to be happy to do surgery on you if it's at all possible to help. We're the ones who live with the end result. After the 1st surgery in 1994, 9 years later the level below got so painful and there was some other issues, I think it was my left arm and hand, but don't remember exactly. So C5-6 got fused too. My neck's never been the same. Not that this will be anyone else's experience but agree that spinal surgery is especially tricky. I've had lumbar lamenectomy too. That was 1985. There are situations where it really is the only way to relieve nerve pain, etc. I hope you don't have to get neck surgery, but do get a second opinion if you're seriously contemplating it. I hope that other options open up somehow too. Blessings.

@boomermeg
No color doppler has been done. I'm experiencing a strange thing this morning though. I've slept two nights in a row, waking in the morning with little to no pain. My right hand still has a little numbness but isn't as angry feeling. I'm questioning surgery and with comments here, I may stop the surgery. My neck never bothered me BEFORE the inflammation set in. It's all soooo confusing 😕!

@geve
If you feel so inclined, I would ask PCP to give referral see a Rheumatologist post haste and put surgery on hold. I had a lot of hand/finger, upper arm involvement in my PMR along with shoulders, neck, upper back "girdle" as they call it re PMR. Also hip girdle/leg issues. PMR presents differently in each person I've seen post here so yours could be PMR but you won't know if you don't see a Rheumatologist and ask for color doppler (also called Power Doppler) Ultrasound of your shoulders. If Rheumatologist thinks it is PMR after examination she'll probably ask Ultrasound to check for GCA (Giant Cell Arterits) also which happens a lot with PMR patients and is very serious so need to know if you have it.
Just my suggestion but sooner better than later and then decide if you actually need any neck surgery or other neck treatment??? And let the Rheumatologist office know that you're not sure if you need neck surgery or is it PMR. You could ask Rheumatologist office to get on cancellation list if they give appointment weeks away. Might help. Blessings.

@boomermeg
Since I have now had 3 seperate recommendations that I need surgery... that's a go. In the meantime, my GP thought it was a good idea before surgery to do the 5 day prednisone treatment. I'll have an idea before surgery what may or may not be affected by PMR. You guys have been a big help in making my decision. Take care and thanks for the info. I'll keep you posted.

@geve
Glad to know you've had 3 separate Dr's who recommended it. I take it you've had MRIs to confirm it is nerve related in your neck. Also good if you feel good about it. I hope it works for you and that you don't have any lasting issues with your neck after it heals from the surgery. Do keep us posted. Blessings.

Hang in there I remember being only able to sleep about 1 hour per night because of the muscle pain from PMR. I sat and cried every night for 2 months until finally the fifth Doctor I saw finally put me on prednisone. I am glad to say PMR started in August of 2025 and as now I have been tapered off prednisone for 98 days and tolerating a very manageable pain level mostly around 2-3AM. My grandfather and his sister had PMR in the 1980's and prednisone was the only option then. Best wishes moving forward. Bill

@bkearbey1 Very encouraging reply - nice to hear you are tapered off!
So sorry you had to go so long without getting prednisone.
I'm looking forward to getting where you are.
In the meanwhile, taking some great suggestions from this forum, and feeling encouraged.