Could it be pmr?

[Mag999]

I’ve had umpteen doctors appointments since I collapsed 18 months ago with severe cramp all over with fatigue and slurred speech. Not a stroke, according to mri. Blood tests showed severe vitamin deficiency, d and b12 now I self inject and take d all year round or it disappears. I have osteoporosis after early menopause can’t tolerate hrt.

Lots of little things but not a diagnosis. I tire really easily having been fit before. My arms and shoulders ache all the time, I can’t lift things over 10 kg where I was lifting hay bales and feed bags daily. I get headaches daily, blurry vision jumpy vision. The left arm and shoulder is much worse although initially it was the right but as it’s not symmetrical am I right in thinking it is less likely to be pmr. I see a physio who says I have nerve damage but he can’t say why.

My gp is at a loss, I can almost hear the sigh if I make an appointment. I’m on the pernicious anaemia and thyroid sections too and have had lots of great advice but I still have all the same symptoms albeit less dramatic than the initial collapse.

I’m so confused about where to go for help.

Thanks for reading and sorry if I’m barking up the wrong tree but I do see some similarities in symptom descriptions

[DorsetLady PMRGCAuk volunteer]

Never be sorry about asking a question….it can very worrying when you can’t see you get a sensible (if not particularly wanted) diagnosis.

Have a read through this and see if things ring bells…..if they do it might be worth mentioning to GP and asking for a referral to Rheumy..

practicalpainmanagement.com...

It might need a private appointment, if that’s a consideration, if so whereabout do you live - and how far willing to travel. You will get recommendations.

[Mag999 in reply to DorsetLady]

Reading through the symptom some fit and some don’t, I get the aching shoulder girdle tongue and jaw claudication, but my crp/ esr has always been normal range. I get frequent transient blood clots in my hands and feet but my clotting time is just inside normal at the fast end of the range so no one gets excited about that. I looked at GCA because of that but my headache is quite dull and my vision blurs but will clear within an hour. Doesn’t feel as acute as GCA.

[PMRpro Ambassador in reply to Mag999]

GCA doesn't have to feel acute - depends where it is settled. And CRP/ESR can be normal range in up to 1 in 5 patients.

[DorsetLady PMRGCAuk volunteer in reply to Mag999]

Don’t be sidetracked by ESR/CRP between 7-20% of patients don’t have raised markers…..as for GCA- doesn’t always have to be crash,bang, wallop - it can increase incrementally, so don’t rule anything in or out.

Needs further investigation.

[PMRpro Ambassador]

Has anyone at any time tried you on a tapering course of pred starting at 20mg? That might add a brick to the wall of evidence for or against PMR. But what you describe could apply to many autoimmune disorders and fibromyalgia amongst other things. It is said by some that PMR is always bilateral -but there are cases where one side is worse than the other.

There is no cure for autoimmune disease - it is symptom management with almost everything. So it is worth trying - you can stop if it doesn't make any difference.

As my mate on LupusUK says - you need a True Detective Doctor Actually - worth posting there too, they collect all sorts of weird symptoms - lupus isn't just a facial rash!

[Mag999 in reply to PMRpro]

Still looking for a true detective doctor, they are thin on the ground!

[PMRpro Ambassador in reply to Mag999]

I know - I do know a few though!!!

[piglette]

You could ask your GP to refer you to a rheumatologist, although you may be waiting for months and may need to go privately. As PMRPro suggests you could ask your GP to do a trial of steroids for a week or so. If they work that would narrow it down to possibly PMR. If they don’t work, at least that might discount PMR. Have you had a Dexascan to measure your bone density recently? Are you taking a Bisphosphonate for your osteoporosis? Are your vitamin D and B12 levels now OK?

[Mag999 in reply to piglette]

Thanks for your reply, vitamin levels are normal, well d is as long as I keep taking it and b12 can’t be measured accurately once you’re injecting as it just comes back way above normal range. My last dexa lead to bisphosphonate prescribed but not started yet as I need dental work done first. I have been asked to get test for lupus done and will ask gp about steroid trial , I had assumed that was a big deal last resort but if I can try and stop if they don’t help sounds like an option.

[piglette in reply to Mag999]

It sounds as if you are being cared for, it is just a matter of finding out if you have PMR or not. If your GP would agree to say a week or so of steroids which you could stop immediately afterwards if they did not work. That would really help the diagnosis I would have thought.

[mgrogers99]

It can take up to one year to fully recover from pernicious anemia.

[Mag999 in reply to mgrogers99]

I’m about 18 months in with little improvement and no help from docs on how to proceed. I self inject weekly but never sure it’s enough as my symptoms don’t really shift. It just helps my energy levels.

[mgrogers99 in reply to Mag999]

Maybe you need additional workups