Almost there....

nicole

Hi all
Well after a hiccup with a missing private referral I saw the rheumatologist yesterday. I was so nervous but he instantly put me at ease. He asked me loads of questions ranging from my family life, work, childhood through to symptoms. He checked out some joints and then my range of movement, or lack of. He confined osteoarthritis but said that there is certainly an inflammatory arthritis going on there, he threw some long and scary words at me, spondolyapothy, ankylosing spondolyitis, sacrollitis, spinal fusing, something about inflamed ligaments being turned to bone. Anyway, they've taken more blood to test for the HLAB27 gene. I have a full MRI booked for today (how quick is that!) and go back Tuesday after work to get my results and find out my treatment plan. If I win the lottery jackpot this weekend I will personally pay for all of you who are waiting for a diagnosis to have private consults. I will need to transfer to the nhs at some point as my company will only cover £1000 outpatients cover a year and I have probably used half of that so far, I will have to pay any medication costs so not to sure how much they will be but for now I am thanking my lucky stars (that's almost an oxymoron, lucky and autoimmune disease in the same post) take care everyone.

hileena111

Hi Nicole
What a fantastic appointment
Really positive.
An MRI the next day :shock: You'll have to post and let us know what happens at that as well.
Great to hear some good news
Even if he did through long scary words at you its a great start. I always think once you know what's wrong you can cope with it.

Love
Hileena

barbara12

Hello Nicole
Doesn't it make a difference when you have a good appointment..this is what they should all be like, friendly..take there time and explain things..good luck with it all and please let us know how you get on xx

stickywicket

That sounds like a very good appointment and a quick MRI into the bargain. I'm very pleased for you and thanks for the update.

A word of caution - I think you'll have made greater headway into that £1,000 cover than you realise. The average cost of an MRI alone is £500.

nicole

Just got back from a full spine MRI (thanks for the cost info stickywicket) so a bit of info if anyone is interested, the whole process took 60 mins, i had to lift my legs once lying down so they could put a cushion under them, that was rather painful to do, they put my head into a cage like contraption and fitted me with some ear plugs. I was told that all I could do was breath, swallow and blink. They gave me a few minutes to relax, I struggle to relax my lower back so that was helpful, it was rather hard going on my back, I was in quite a bit of pain after a while but could feel myself tensing up which didn't help. I lay in there panicking about how on earth I was going to get off of the 'bed' after a while. They talked to me throughout the whole process and gave me a buzzer to press if I needed to get out of the scanner. Once finished I really couldn't get up and felt so daft, they told me to raise my legs and rock my hips from side to side. I managed eventually but I wasn't very elegant! Top tips, if you have long hair, tie it up, wear a sports bra without metal clips that way you can keep all your underwear on, dose up on pain killers and visit the loo beforehand! X