I had a 9am rheumy appt today in the clinic overseen by one of the professors, and I have another next week in a clinic overseen by another professor. I haven't, and most definitely wouldn't , question why I have 2 appointments. Gold dust comes to mind.
At today's I was called in by a very pleasant junior from Australia. Given my bad eyesight at the moment, I thought she was the one I met some time ago, and that she'd had a personality transplant. No, it was a different blonde beauty without withering put downs or barked orders. She asked if I'd be happy to have a Spanish junior sit in, and I thought it was fine.
We got into the consulting room in a flurry of excited questions and chatting back and forth. They found everything about my health so interesting I had to touch the table to make sure I wasn't imagining it.
When I mentioned the extra eye and mouth dryness, which has gone beyond what I'd consider only the result of med side effects, and I now regularly need drops and mouth moisturisers, I got a referral to oral medicine and a ct scan of my glands.
I was asked how I coped with the Raynaud's and I gave them my usual practical measures. The survival blanket caught their attention. A good chance to open eyes to how we self manage? They noticed how very purple the palm facing sides of my fingers are. Sildenafil was a no-go for me because of my low BP. I'm going to give Trental (Pentoxifyline) 400mg modified release 2 x day a go. It's a peripheral vasodilator, but there's a slight chance it might be another no go because of my BP.
Now comes the part I think many of you will be interested in : I've been asked to, and am, taking part in, a research study. This study really makes me feel they are doing their best to puzzle out our different varieties of auto immune disorders, and trying to find blood/gene markers which might explain why we all have different intensity of symptoms, why we have flares, what might have been a catalyst for the AI takeover, and ultimately perhaps identify those with the propensity to develop an AI disorder. I think I'm roughly right about that. I'll put a link to a paper previously written by the same lead doctor and Professor at the bottom for those of you better read up on these things.
Today I've given 8 samples of blood. 4 for now and 4 to be tucked away or sent around the world. I've given permission for all the blood tests, scans, MRIs etc to be shared here, in Europe, and at Harvard. The research will be 6 monthly appts. It's called DEFINITION ( DEFining Interferon mediated autoimmune condITIONS)
The young Spanish medic was there to give me a 10 min cognitive test because they are going to tie brain fog into the research.
I think this is all quite good stuff in terms of attempts made to understand us better. This research study seems so much more positive than the one I'm on at the moment (the ten year death rate and causes study) . That one makes me 😂 when I think of statisticians counting how many got run over by a bus. Pl forgive black humour.
eprints.whiterose.ac.uk/106...
So, that's this week's appt. next episode is next week. I would be off for a nice lie down in a dark room, but the dog is tapping his claws insistently so I think a walkie is in order.
Osteonecrosis and other rare bone diseases
Groundbreaking genetic discovery shows why Lupus develops
