The jury's out

I don't know whether to say I'm sorry or not Molly :!: I wouldn't wish PMR on you but at least one knows where one is when there is a diagnosis, and can start tackling it so to speak. Must be frustrating.

I met a man today who is just finding a nursing home for his wife, aged 57, She has had a form of dementia for 3 years, has become very word blind so now can't speak or understand really, apparently unusual. It sounded dreadful to me so young but he said it was better to know once there was a diagnosis. I felt so sorry for him - and her. Makes one think and realise, as others have said, that there are a lot of people worse off.

Whatever I do hope that something starts to work for you!

Green granny

Hi Green Granny,

thanks for your reply. I too feel very sorry for the lady you speak of, so young too. I thank my lucky stars every day that this is only PMR (if that's what it is) and nothing worse, there are lots of much more serious illnesses. It is a little frustrating but I feel pretty well and the reduction is going very smoothly so far, so I'm thankful for that. PMR or not, as long as I can keep reducing the steroids without a return of the pain, I shall be happy.

Best wishes,

Molly.

I had a letter last Christmas from my (sort-of) cousin's husband telling me she had been diagnosed with dementia after starting to be rather forgetful. This Christmas it was to tell me she was now in a nursing home as she was beyond his ability to care (mid-October) but had fallen and had a neck of femur fracture and just after New Year it was to tell me she had died. She must have been about 10 years older than me, her boys are about the same age as my girls (30-ish) - she was 39 before she married. Dementia of any sort is foul - you lose the person over such a long time and by the time the end comes most of the good memories have faded. I'll take the PMR any day.

Hello Molly

Well you probably/possibly ?? dont have PMR !! Not a very definitive diagnosis and back to the good old \" virus \" !! As you said it would be nice to have a diagnosis Im a bit surprised no shocked !! that a Rheumatologist would say you are too young for PMR at 67 ???? I was 54 the first time and my Dr had no hesitation diagnosing it and there are many people on here who are younger than 67 who have it

I hope whatever it is goes away and you have no problem coming off the steroid

Mrs G

Hell's teeth - \"it's a virus\" was the excuse for poor diagnostic skills 40 years ago. Nothing changed then???? And what about the fact that that virus may have triggered the PMR? Or that you might be one of the how-ever-many % who need 20mg to respond? And that at least 50%, and probably a lot more, are \"atypical\"? Are you comfortable and able to function on your current dose of steroids? If so - where's the problem????? :roll:

Too young at 67? My response to being told I was too young at 56 was that, whilst I found it quite nice he felt I was too young for something - I didn't agree. Plenty of evidence in the literature that 50 is a perfectly reasonable age and it is now part of the guidelines - ask about his bedtime reading. :wink:

Wouldn't it be splendid if the \"professionals\" would stop looking for/ accepting the short answer? I we on here know about the variations in symptoms/age/responses why is it beyond those whom we are expected to trust to advise us.?3

I fear that the \"reforms\" will probably make it easier for people like us to get a decent service but what about the inarticulate/ timid/ill informed?

Cannot join in the discussion because of lack of experience but have to say I agree with everything you have all said.

I feel 'too' young at 59 to be diagnosed with PMR and although not controlled with 20mg have to say that I am happy is not cancer and will not kill me although bloody awful painwise and mobility wise that is all it is :roll:

Why is this disease still so difficult to detect?

BettyE - my refrain exactly! How on earth does Joe Public ever survive a visit to some docs? I used to think rather differently about their abilities and had a bit of sympathy for the problems they face but as I go through my own patient journey and look back I start to realise what a set of arrogant people I have come into contact with - and they knew me and my husband professionally. It infuriates me when my name/position gets me better treatment - but I have had occasion to be grateful not to be treated as an idiot with no knowledge. It is still disgusting, however.

:steam:

Some people are 'intimidated' by 'medics' and are meek and unprotesting and put up with their attitude and arrogance....

Me, no :lol: Have NEVER allowed a medical professional to talk down to me and have actually stood up and left an appt because of an appalling attitude and told them why I am leaving!

My rheumy in this category and looking forward to end of March when I take him to task.....makes you wonder why some people go into the 'caring'profession if they seem to belittle and put down their patients?

As far as I am concerned it is a partnership and we work together to enable 'good' health.

I am intelligent and when I question I expect to be answered in kind..... not put down or given a leaflet to read!

Good for you 50sgirl - I have several times reminded a doc I too have a degree in a medical field and in that field I know rather more than s/he probably does and studied alongside medical students who were as thick as planks, just well-heeled parents kept them there. Don't patronise me! :x