I'm feeling really frustrated....I turned up for my rheumatologist appointment this afternoon, to be confronted by a complete stranger. My rheumatologist of 3 years, has left. I had to explain everything to this bloke, including why I had been prescribed my meds...and he even asked why I was wearing mittens in the 'warm hospital' ,he clearly knows very little about the types of Scleroderma, or at least not half as much as my ex rheumy. I know people have to move on but can't help feeling let down. I expect many of you have been through the same thing. I'll get over it I'm sure and am relieved that at least I am stable except for Raynauds being bad at the moment. Sorry this is just a moan......😕
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Wengc
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Shame this sort of thing happens, every time I go somewhere for a medical appt I always ask whether they know of Scleroderma, then give a precis version of what goes on but I find it really stressful when you have to go through everything and sometimes they want to change everything prescribed without knowing what happens. Fortunately, I have a good rheumatologist and GP, but my GP is off for a break at the moment, other doctors sometimes won’t prescribe my usual drugs then when I get the drugs there are some missing. The stress we all have to put up with is no joke and sometimes we understand Scleroderma better than they do.
We have to be ahead of the game all the time, glad to hear you are stable.😀🔍
That's a really good idea, before my next appointment I'll try and find out how much he knows or find someone else who is more informed....I hope your GP returns soon- it is hard when you're feeling ill to have to keep on top of things I know. I hope you're in a stable place too right now....🌻
I’m fairly stable at the moment, although I had an ECG and ultrasound last week and they asked if I was having palpitations, check pains etc. The stenographers were very good and spent over an hour checking things out, they said I had a skipping heartbeat. They asked for my list of meds and checked on the phone with an expert and would expedite to my rheumatologist. I was a bit concerned but they told me to call A&E if I got any serious problems, I said maybe it’s been there all the time and I wasn’t aware, I’m on BP pills. Anyway will see what happens, I’m taking things easy as I usually do.
I was very impressed with the girls, they liked me cos I got their weighing machine working, ithey didnt know what was wrong with it, it wasn’t plugged in!⚖️
I hope it stays as it is with no further developments, we know we have to listen to our bodies.....and it'll be interesting to hear what action your rheumy takes.
I always thought ' if stuck unplug it and start again' but it does help it the machine is plugged in to start with!
I've never had the same rheumy twice, after 7 years. I go to Kings in London, and you just get what you get. It's very frustrating. On the upside, because the department is so big, you get put into a specialised clinic so at least the rheumys all know about the type of condition you have and deal with it all the time. I would still like to build a relationship with just one doctor though.
Hi there, it would be great if all rheumys had the same knowledge - you're really fortunate with that I think. My hospital clearly has some gaps in the knowledge base! Keep well....💠
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