I have to laugh. I raced to get to the rheumy on time. I was booked in with the top dog of Hammersmith Hospital. The bus took forever. I had to run the last five minutes to be there on time (I hate being late). I am called by a young registrar and he tells me that the appointment is wasted as now they know what is wrong with me (acoustic neuroma/vestibular schwannoma). Since I was there I asked about the neuroma in my ear and isn't it more common in GCA patients. He said it has nothing to do with my PMR. I mentioned THE FORUM and he smiled - a smile like 'oh no not one of these people'. I told him that there needs to be more good rheumatologists and how THE FORUM is so helpful when there is little help, advice and info available. I gave him the printout about ear issues and PMR/GCA which he looked like he was reading. I asked what could be done about my feet (OA) - nothing. I had blood taken. Despite my run to get there my BP and pulse are fine.
Nothing ventured. Nothing gained. Nothing gained except lots of steps so I exceeded my usual step count. Maybe I should have had one of you join me.......
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whitefishbay
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You can't be doing too badly, wfb - you RAN. Can't even remember when I could last do that!Stay with it/us. I've found that rheumatologists get to a point when they go back to reading their old books on PMR/GCA and quote us what should really happen - not what does. They don't know as much as we do (or at least OUR specialists on here)!!!
The registrar was young....no aches and pains. I asked him what his specialty was and he doesn't have one (that young). Do they ever let us see a consultant (an old consultant)?
Do they ever let us see a consultant (an old consultant)?…not unless it’s absolutely necessary😳..but a young one may learn something from his patient…if he listens that is!
Even when I was told I had a vestibular schwannoma (benign brain tumour) I had a registrar. Wonder if I would have seen someone senior if I freaked out at the time or started crying. Us PMRers are hardy and stoic I think.
Now me, I've just been at a zoom meeting with several rheumatologists - all of whom are very interested in what I and the other patients who were there had to say. And the forum was mentioned a few times
Well he was a young registrar from Dublin. Very nice but young. I used to see Dr Ben Ellis and he was also nice. I just get the feeling that they sort of feel PMR is not a serious illness.
Give them a week, or even 24 hours, of how any one of us felt before we were diagnosed and treated and they would sing from a different songbook. It may not kill us but it takes our life away.
They are often taught it is a simple disorder, easy to manage with pred. The group of rheumies I was with last night are heavily involved in research and they KNOW it is neither. They often comment on how they are realising it is a very complex disorder that probably has several expressions - a bit like MS comes in 3 flavours that differ in progression.
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