Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group newbie- general advise please

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And this paper is 2006 - diagnostics have moved on - MRTI Saggital STIR etc etc is the best tool to show inflammation, enthesisis spinal problems etc etc until...damage has taken place (which won't be until some time has elapsed - nowt set in concrete, but...)

http://www.ncbi.nlm.nih.gov/pubmed/16777579
Best Pract Res Clin Rheumatol. 2006 Jun;20(3):507-19.
Imaging in ankylosing spondylitis.
Maksymowych WP, Landewé R.
Source
Department of Medicine, University of Alberta, 562 Heritage Medical Research Building, Edmonton, Alta., Canada T6G 2S2. walter.maksymowych@ualberta.ca
Abstract
The introduction of symptomatically highly effective anti-tumour necrosis factor alpha therapies for ankylosing spondylitis (AS) has generated interest in the use of imaging to evaluate the potential structure-modifying properties of these agents. Several approaches have been developed to score the plain radiographic abnormalities in AS. Of these, the modified Stoke AS Spinal Score is the most responsive to change, although responsiveness is limited and requires a minimum of 2 years before significant change becomes apparent in patients on standard therapies. Magnetic resonance imaging (MRI) is the most sensitive imaging abnormality, and the advent of fat-suppression imaging allows detection of bone marrow inflammation in the sacroiliac joints as one of the earliest abnormalities in AS. Limited studies have shown that spinal inflammation can be scored reliably using either a system that evaluates the entire spine or a system that limits evaluation to only the most severely affected spinal segments. Both methods also demonstrate excellent responsiveness. The prognostic significance of acute changes on MRI remains unclear. Reliable approaches to the evaluation of chronic changes are yet to be developed. MRI represents a major advance in the diagnostic evaluation of AS.
PMID: 16777579 [PubMed - indexed for MEDLINE]

Related citations in PubMed
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[Adv Exp Med Biol. 2009]
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Review Imaging in spondylitis.
[Curr Opin Rheumatol. 2005]
Review Advances in musculoskeletal imaging and their clinical utility in the early diagnosis of spondyloarthritis.
[Curr Rheumatol Rep. 2007]
The relationship between inflammation and new bone formation in patients with ankylosing spondylitis.
[Arthritis Res Ther. 2008]
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Cited by 3 PubMed Central articles

So very sorry to hear how much pain you are in and how little help you've gotten so far.

It took me a long time to get a dx, but i haven't been as acute as you have been for so long: really acute for just a short time with tolerable times in between.

can you take a relative with you who has been dx'ed with AS and has similar symptoms? that might help.

i live in the U.S. and for me, i had to fly to another city in another state, spend my own money, to finally get my dx. then came back here with that doctor's letter and finally got into a good practice.

finally i'm doing much better between flares. but still i flare every few months, then i take methylprednisone for 6 days.

you can see what the doctors have me doing below my name.

stick around here and you'll find all kinds of advice to help you advocate and navigate for yourself better.

welcome

Lizziekarma - I am sooooo angry on yr behalf that I would seriously consider making a formal complaint against that rheumy you saw - protect other patients comiong after you!

Suggest contacting : Sir Neil McKay CB
Chief Executive, NHS Midlands and East (this is assuming he covers your area, Midlands?) IF not McKay then find out 'who' is the Chief Exec in your area, and make a formal complaint, *suggesting...that that rheumy is sent for retraining sessions. Desperately needs updating in their knowledge.

This is their agenda : http://www.westmidlands.nhs.uk/WhatWeDo.aspx

West Midlands NHS website : http://www.ifh.westmidlands.nhs.uk/

More contact details : http://www.westmidlands.nhs.uk/WhoWeAre/ContactUs.aspx

By pursuing this, you will turn a wretched experience into a positivity for all patients. 'Smile'. It's a pain in the butt, but treat it as a 'focus' to 'do' project. OK?

Go well -

P.S. Have rechecked (spoke with my nursing friend in yr area) It is not Neil McKay. You come under North-West Region : http://www.northwest.nhs.uk/whoweare/boardprofiles/ - got a mention of Liverpool under: Dr Ruth Hussey, Regional Director of Public Health You'll probably need to make a couple of phone calls to ascertain to whom you should direct your complain. (Gave my chum a thumb-nail sketch, she said that you MUST put in a formal complaint).

omg thank you so much for all that information! you are brill! I had a hell of a pregnancy two yrs ago it was awful couldnt move, they kept me in the last month stuck in a bed. they said my illiac joints and sacrill? blah blah bits were all fused together. they didnt want me to give birth on my back or nothing but i did as i was too scared to do it standing up.

you'v been a great help
thanks so much

my grandad actually phoned me today. he said to ring the rhuematologists secretary and state that if he hasnt looked at the xrays by the end of the week he is paying privately for me to be assessed by a rhuematologist of his choice and if their is anything he has missed he will be sueing him for emotional distress and my loss of earnings. His secretary took my phone number and said she would pass ont he message and ensure that my xrays were looked at asap due to what the radiologist said when doing them.

we shall c what happens.

im defo going to ask for a referal to a new rhuemy though, thank you so much for all your help and il be going armed with these documents. im going to see if there is any way i can forward them onto that rhuemy as well as he seriously needs some retraining, and i will be making a complaint first thing.

thanks so much

You are very welcome lizzykarma - hope it all does the trick for you.

Re getting the info to that rheumy whom you saw - print the material off, parcel it up, and send it, or pass by and give in person. Marked for his attention.

Good for your grandfather. One all too often has to be more than proactive: taking the bull by the horns and directing operations oneself!

Good luck with it all - let us know how you get on -

Take care -

just been on the broadgreen website, there is a complaints section, i made my complaint they are then available onlline.

there was actually a woman in april this year who moved here and was refered to a new rhuematologist in broadgreen hosp. she had been diagnosed with AS over 10 yrs ago. he stated women cant get it, undiagnosed her took her off her meds etc etc. she then had to pay for a second opinion and was diagnosed with AS again and put back on her meds after obviously suffering imbetween.

looks like broadgreen really does need some re-education.

iv posted my complaint anyhow. lets see what comes of it. prob wont even bother looking at the xray now though lmao

xx

your right wont kill me to call in and drop it in for him i guess.
good idea lol!

thanks hun
night

I wouldn't just rely on a complaints form on a website. Best way to get a complaint through properly and get it taken seriously is to do it through PALS (Patient advice and Liaison service) at the hospital. Make sure they do do a formal written complaint for you. That rheumatologist needs to be shot, or at the least have a serious retraining session. PALS should also be able to help you get referred onto a new rheumatologist who specialises in AS, and to make sure that you get a referral quickly if you have made a complaint - you shouldn't have to wait the normal length of time for a referral if the reason for the new request is because you have been treated so badly.