I've not posted for a while so thought i'd make a bit of an update.
My feet and ankles hurt a lot currently and I have 3 egg size swellings that are very clearly visible. This is good I feel, as I have an ultrasound scan booked for Friday and if I can visibly see the swellings, then the ultrasound should surely pick them up. I've been reading up on early inflammatory arthritis and an ultrasound is apparently an excellent way of picking up early synovitis.
I'm also astounded to have just received a call from my Rheumatologist. He sounded like a different man. Immediately after my appointment he spent several weeks on leave to attend to a personal emergency. He called me today having received a note taken when I called a few days after my appointment to ask about the results reliability of bloods taken during a period of no inflammation, following 4 months on NSAIDs and whilst on a course of steroids.
He called me to say this absolutely would affect my results and that he wanted me to have the bloods taken again. He's arranged the paperwork for me! Yay! I mentioned that i'd had my appointment for the ultrasound through and that it was good timing, as the inflammation in my ankles/feet is currently high and he confirmed this was a good thing.
2 minutes of his time - but it's done me the world of good and has made me feel renewed hope.
I am also wondering if he was so dismissive and blunt with me during my first appointment because he'd just received information about the family situation he had to attend to, making him preoccupied and short with me? It would make a lot of sense if so, as he sounded so different talking on the phone to me just!
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ShellyWelly
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Thank you allanah! I'm slightly worried, but looking forward to seeing what the scan reveals....I just hope the swelling doesn't spontaneously disappear in the next 3 days!
Glad to hear you've got the US this week - good luck with it and the results. It does sound as if your rheumatologist was preoccupied at your first appointment - pleased to hear he's re-ordered the tests too x
That's just amazing - so pleased for you. I guess it's well-nigh impossible for us to take on that rheumys are human at a time when we desperately need them to be highly efficient professionals, but your relationship with this rheumy could be sooo much more positive now he's shared the likely reason for how he came across.
It's a barking mad situation when swelling is 'good'! I've often looked at swellings willing them to stay big at least until my rheumy appointment. But the great thing is that once we get effective treatment we can start thinking differently & focus on getting better. Have you taken photos of swelling, just in case?
Thanks postle2, true. We invest so much energy and hope into each appointment that when they do go as hoped it can be pretty traumatic, but yes, he really did sound like a different man on the phone. Incredible.
I know it's crazy isn't it? Willing my symptoms to stay around and purposely not taking meds that provide at least a little relief. My friend in Stafford who has just been diagnosed with early onset inflammatory arthritis has been given access to a clinic at the hospital and any time she has a flair she has been told to go along, straight away, no appointment necessary, so she can be examined whilst in a flare. Can you believe it?! The standard of care differs SO much and I am only 30 miles away from where she is.
I have taken extensive photos yes, i've put together a collection of the best (worst?!) ones which all very clearly show swelling and redness. I am now starting to worry in case the US doesn't pick anything up, but if they are so visible to the naked eye, I don't see how the ultrasound won't see them too.
Have a good day x
So pleased for you Shelly! I had some instincts that this rheumy might actually be a good 'un who was just having an awful day - from what you said and are saying now he's thorough even if he was a total grump on the day. As others and you have said he's just human and bad news of a personal nature could make anyone appear off-ish I suppose.
I wish my lot would have given me ultrasounds when things were bad in tendons and joints because I have rarely showed visible swelling and always felt disbelieved (sort of disbelieved my own pain more than they did if that makes sense?). But it isn't an option where I live so I have had to rely on people I don't entirely trust - apart from my rheumy. and I don't entirely trust him either to be honest! Xx
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