This morning I had my appointment with the Consultant Rheumatologist about my Ehlers-Danlos and I’d only had to wait 3 weeks from referral which is virtually unheard of 🙂 I haven’t seen a Consultant about my EDS since my diagnosis in 2010, despite the fact my condition has markedly deteriorated in that time. I was originally diagnosed by Dr Paulene Ho in Manchester as she runs a hypermobility clinic but it’s 100 miles away and I’ve since learned that the Rheumy at my local hospital in Cumbria does recognize EDS so obviously I opted to see him this week.
He was very nice which is half the battle IMHO. I’ve lost count over the years of the Consultants I’ve seen who are arrogant, don’t listen, have decided what’s wrong with you before you walk in the door then try to shove you out again 15 seconds later, so to see a Doctor who listens and asks all the relevant questions is always a relief. He didn’t bat an eyelid when I said I had Mast Cell Disease and seemed to know it is now thought to be linked to EDS in some patients 🙂
My main concern is my hips, in particular my right hip. I’d never had any hip problems before April 2014 when they suddenly started killing me to the point where I couldn’t sit, stand or lie and the pain kept me awake at nights. I was diagnosed by my GP has having Greater Trochanteric Bursitis (not sure how as no x-rays or anything were taken, maybe she’s psychic) and passed on to physio who prescribed total rest. I then spent the next 9 months on crutches. The hip pain did settle down but I’ve been left with vastly reduced range of movement, stiffness and pain on rotation. I’ve put up with all that for over a year hoping it would sort itself out but it hasn’t, so I decided I should see someone about it.
The Rheumy confirmed the range of movement in my right hip is pretty dire. Only about 30% outer flexation and 5% inner flexation, as against 70% outer flexation and 40% inner flexation in my left hip (which still isn’t normal either) 😦 So he sent me off to x-ray, which took nearly an hour because it was lunch time. The x-ray thankfully showed nothing untoward bone-wise so he’s referred me for an MRI scan to see if there are any ligament tears – I’ll just have to wait for an appointment. I’ve had so many x-rays and scans over the past 40 years it’s a wonder I don’t glow in the fucking dark 😉 He doesn’t think I ever had bursitis (which I suspected anyway) as this doesn’t tend to affect range of movement to any great extent.
To be honest I don’t think there’s anything wrong with my hips at all. When I was on crutches last year both hips hurt like a son-of-a-bitch and I wouldn’t have torn both ligaments at the same time, just like I wouldn’t have developed bursitis in both hips at the same time. I think the issue is with my back and has been for years – Doctors seem reluctant to tackle back problems though as they’re notoriously complicated! The Rheumy today did concede though that if the MRI came back normal he’d have to look further afield to find the primary issue.
I had all sorts of questions to ask him but all he wanted to concentrate on was my hips, which I understand given the stupidly limited amount of time you get to spend with Consultants (I did remarkably well today and saw him for 20 whole minutes!). The lump on my finger mentioned in this post is still sore as all hell but he couldn’t care less so I might make an appt with the nurse at my local health centre and ask her what I can do to sort it.
So, I’m now waiting for a scan, my moulded insoles and to find out what’s going on with my deformed knuckle. I’ll keep you posted on all three, whether you want me to or not 😉