Not PMR

[FerrySlipper]

I just wanted to thank everyone who took the trouble to answer my queries last year when I thought I had PMR. Once both senior rheumatologists at my local hospital gave up on me, saying they couldn't find a scrap on inflammation in my whole body, I was very demoralised and began to question whether it was all in my head. However, I went to a new private GP in London who referred me to a neurologist. The neurologist didn't think it was neurological but ordered scans and new sets of blood tests. I've now tested positive for Myositis (a collective term for rare muscle diseases) antibodies, specifically Immune-Mediated Necrotising Myopathy which is extremely rare. I'm now being referred to a UCL professor so am finally, nearly 21 months from onset, beginning to get some answers. I mention this in case others are struggling with their diagnosis. I will now leave this community and transfer to the tiny Myositis one! Many thanks again.

[SnazzyD]

Sounds much more exclusive than our club! 😉Seriously though, well done for keeping up the fight and getting there in the end after a hard journey. True, the destination could be better, but being heard and believed counts for so much. Are you going to write a letter to the nay sayers just to follow up and let them know the outcome??

Good luck!

[MrsNails]

Best of Luck FerrySlipper 🍀

[PMRpro Ambassador]

The various forms of myositis are a differential diagnosis for PMR - and creatine kinase is a blood test that often makes it relatively straightforward and why it should be done in ?PMR.

But don't feel you MUST go away - living with it may have lots of parallels with PMR, not least that steroids are often included in the management!

[Coffeebeans]

Very glad you have finally got to the bottom of it. I hope you stick around on this board and hope the knowledge here helped you through the harder times.

[Coffeebeans]

Very glad you have finally got to the bottom of it. I hope you stick around on this board and hope the knowledge here helped you through the harder times.

[Sophiestree]

Wow! As much as that sounds tough, you must be pleased it has a name now.Good luck. Hope the treatment proves positive for you.

[SheffieldJane]

It is such a relief to finally get a diagnosis. Well done for your tenacity!

[Carriemetz]

Well done for persisting until u got a diagnosis. It doesnt sound a fun thing to have, any more than Pmr/gca, but u know what u’re dealing with at lastBravo. On u go. All best wishes, Carrie

[Jackoh]

All the very best FerrySkipper. Well done for perseverance. 💐

[whitefishbay]

Best of luck. I hate it when they don't believe the patient.

[Lochy]

Resilience in getting a diagnosis, well done you. Off to google myositis Good luck on your journey. Think we all get top marks for resilience!

[lalar]

Good for you that you advocated for yourself until you got answers....I am on a similar journey now off to my second Rheumatologist...good luck to you and thanks for sharing