Since joining this group, it has made such a difference knowing that I am not the only person who has this long drawn out problem, which we expected to be cured of.
I am not a moaner normally and get fed up with people who do, but, it’s a bit galling when you’re feeling s... and someone will say ‘ you’re looking very well’
Most people don’t know of the condition, even health workers in different disciplines seem to ignore it as they do atrial fibrillation. Heigh Ho! I straiten up and try not to look like an old biddy. The young optometrist made my day when after doing one or two of his tests said ‘ I have to ask you something, are you really ninety? I thought they’d got the date wrong’. Although I had my walking pole I almost ran back to the car park!
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Mipsie
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My son and family off on holiday today with brother in law from Sweden and his wife. I went there last night as I will be dog sitting.
Charlotta asked ‘how are you’ and I thought for once would tell it how it is ‘Not too bad considering I have PMR, I don’t suppose you know what it is’, on the contrary she knew a lot about it, well she is called Lotta !!! Then realised she is a research chemist. So, I didn’t even mind when she said I looked very well.
Apparently it is a well recognised disease in Sweden.
They assume it is a genetic thing that predisposes people to then develop PMR or GCA - there are loads of factors that are probably involved in developing them which all pile up and then finally one triggers the immune system to go haywire. Whatever they are - and no-one can say this is, this isn't - having a Scandinavian heritage seems to make it more likely. This applies to Scandinavians living outside that region - but there is also some thought low vit D levels may also have a role to play in autoimmune disorders. It isn't a genetic disease in the sense cystic fibrosis or Huntington's disease are so not "attached" to a specific gene or genes.
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