Report from my visit to the rheumatologist

[whitefishbay]

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.......

[Constance13]

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)!!!

[whitefishbay in reply to Constance13]

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)?

[DorsetLady PMRGCAuk volunteer in reply to whitefishbay]

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!

[whitefishbay in reply to DorsetLady]

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.

[PMRpro Ambassador in reply to whitefishbay]

What - not even rheumatology?

[Constance13 in reply to whitefishbay]

Believe me! Few of the "old ones" are any better!!!

[jinasc]

Brilliant you have made him read and learn. Yes, we all need to keep on educating and you have done that. Bet he is different if you see him again.

The work done by that support group and 2 lovely rheumy's and the NHS research dept was well worth it.

[123-go]

If I'd joined you you would have had to give me a piggy back!You certainly gave that young man a run for his money: good for you!

[PMRpro Ambassador]

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

[whitefishbay in reply to PMRpro]

Great. I can honestly say the forum is a lifesaver. How depressed would/could we all be with out it (no one to turn to).

[Ana-16]

I’ve got an appointment at Hammersmith for January. If I get to see the same dr I hope he will have done a bit more reading.

[whitefishbay in reply to Ana-16]

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.

[HeronNS in reply to whitefishbay]

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.

[whitefishbay in reply to HeronNS]

Absolutely. I wish they could get it for a day. A bad day. 🤣

[PMRpro Ambassador in reply to whitefishbay]

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.

[whitefishbay in reply to PMRpro]

Glad to hear they are so open and knowledgeable. They can spread the word.

[Mgt1234]

Hi,

I was told about the forum by my Rheumatologist, I think around 10 years or so ago, I have found it invaluable.

[whitefishbay in reply to Mgt1234]

Who they must be the enlightened ONE.