2nd rheumy appt...

Hello everyone,

I've had my 2nd appt with the rheumy. On the plus side I have not been dismissed by her, on the minus side, I am no nearer to finding out what is causing the symptoms...

At my first appointment, liver function, FBC bloods taken, all fine. X-rays done as many of my symptoms are indicative of ankylosing spondylitis. X-rays show spine is fine but not clear enough to show anything in the hips and sacroiliac joints.

I got a telling off for not taking the naproxen

Remembered to give her the list of symptoms I had prepared last time. My sun rash had helpfully come out in April and I had taken pictures. She felt if it was lupus induced it would be more red. I had also tried to find pictures where the red rash over the cheeks was showing well, but it doesn't really show on a photo how bright it gets. She described it as pink (but in real life it looks like sunburn) and was quite non committal about it.

So, I have been taken the naproxen and accompanying omeprazole - it has made a difference. My hip has not hurt upon waking for the past 4 days and the stiffness was markedly alleviated. I am back on the 20 mile round trip school run though and that does make me stiff. I hope I can transfer my daughter to the local school for next year - that's a battle I am having with the council as we speak!

I am being sent for an MRI to see if there is any evidence of something amiss in my sacroiliac joints - this would be enough to get the AS diagnosis I think as we already know I am HLA b27 +. I also had a fairly comprehensive set of bloods taken, including ANA I noted. I will be recalled for an apt with her in 3-4 months time (I guess dependent on when the MRI is done)

I did speak to her at length at the frustration I feel at having been left so far to cope with my symptoms on my own for 26 years with no input from any medical professional, explained that the fatigue, IBS symptoms, dizziness etc. were the major problems for me not the pain, altho having taken the NSAIDs I have realised I was in more pain than I thought iyswim. Pain I can deal with but it is more pleasant not having to!

I am not sure how I am feeling at the moment. I am aware that by the time I next see her it will have been a full year since my friends and family became so concerned at how ill I looked they begged me to go to the GP. It's certainly a long road and currently I am not sure I am going to get to any destination other than straight back to the GP...

OK - going to call the council and see how I get on. My request to move schools has been refused (no place at village school) and have been offered a school 3 miles away as opposed to 10. However, I know someone is moving and should be gone by beginning of next term, so I want to snag their place in the school we can walk to! We could walk the 3 miles but it is 3 miles down a little country lane with no footpath and idiot drivers going 70mph!

[PMRpro]

I don't know a lot about AS - except it is something that can be misdiagnosed as polymyalgia rheumatica (PMR) which is what I have (you are much to young to be considered for that though). HOWEVER - I do know that naproxen is one of the first drugs they try quite often as it does work in AS. So to some extent I suspect the offering of that was partly a detective act.

I've always thought that x-rays don't show AS in its early stages - although that was all the rheumy did for me when he suspected AS. And I know exactly what you mean about the actual rather than perceived level of pain - I can still remember the result I had with my first dose of corticosteroid and the difference was miraculous when the pain had nearly gone!

Good luck.

By the way - there is a lady on the VasculitisUK forum, Keyes, who has AS plus Behcets. She was first dx'd with PMR but was sure it was more than that. Eventually she got her dx of AS plus - maybe she could have some advice for you?

[Hidden in reply to PMRpro]

Hi PMRpro, I think I may have spoken to that lady before I also thought nothing much would show on an x-ray in the early stages and was going to suggest an MRI but she went down that route herself with no prompting. She is being thorough I feel, it just all takes so long!

[PMRpro in reply to Hidden]

I know - not really any consolation to know that they reckon an autoimmune diagnosis may take an average of up to 10 years! But at least if you have some management for the pain in the meantime it is a good start.