iMSK appt was….mainly good.
Didn’t get the MRI referral, which is why the GP fricking referred me there & what I need urgently, so that is absolutely NOT good. But she said she was too worried she’d order the wrong ones, even when I told her what the CCI specialist in the US had asked for.
So she’s having to refer me to a spinal specialist to get the MRIs they think I need, which has a really long waiting list & involves a lot of traveling 🙄
Consultant also hadn’t been told I was autistic/the adjustments I needed, which Lyle had phoned about last week & was told they’d pass them along.
The biggest issue with this was it meant I didn’t get detailed explanations of what she was going to be doing in tests, or asking for consent several times (as when I’m making I’ll just say yes automatically). So one test involved stroking all along my face, which I wasn’t told about & which pushed me WAY over threshold. It caused hours of struggle afterwards 🙄 She also misgendered me, despite my cap covered in pronoun pins. This also made me autie struggle a lot more, & feel lost/overwhelmed.
But the good:
- we’re getting referral to a spine specialist so they can decide which MRIs I need (this will be a wait of months 🙄)
- she agreed that I almost definitely have hEDS & has said in our next appt we’ll go through criteria.
- she’s booked me an appt to see her again in 6 weeks
- she’s gonna talk to the rheumatologist, regarding EDS diagnosis (see below as to why)
- she’s also getting in touch with pain management & has suggested amitriptyline for me
Apparently in this area there’s no way to diagnose EDS – they have to apply for an out of area grant & send me to a specialist in Sheffield. The grant is exceedingly hard to get, so yet another diagnosis might be unobtainable due to lack of services in my area. Welcome to healthcare in the UK 🙄
iMSK consultant also pulled up my recent bloodwork, & said my inflammation markers were high. I wasn’t told this by my GP surgery, I just got told my iron was low. So she’s ordered a repeat bloodtest before I next see her 🙂
The last 1/4 of the appt was lost to me as seizures were triggered. She asked me to stand up (turned out so she could do Romberg test); I told her I’d have a seizure, she got iffy, but I pushed for it as I wanted her to do all the tests she needed. Unfortunately after the seizure due to all the bright lights I crashed & could barely formulate thoughts due to fog…so I was pretty ‘blank’ for the rest of the appt 🙃
Overall…kind of a positive appt.
Didn’t get what I need most, but we got some positives.
It did trigger a huge shutdown/meltdown episode, which left me feeling unable to handle going through the city/getting a train home.
As a result Lyle ended up pushing me 8 miles along the canal (constantly reassuring me he loves hiking & the weather was gorgeous 😂) so I’d be able to recover/wouldn’t have to deal with loud noises/lights/crowds 😭
Hugely grateful to him, as I wouldn’t have been okay otherwise. As it was I could rest, recover, & talk through my confusion 💙