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

Thank you Joyce - it's just having been through that particular hospital type mill myself that I got to know the ropes a bit - though cemc filled up the holes I'd left...

Just glad I can help - thanks Joyce. You are very kind. Have a good yourself (pouring rain here. Vile weather, but, don't have to water the garden!)

Its 40 days that you have before they make you pay for copies, but if its been longer and you get PALS involved, they may well be able to get them free for you if you are making a complaint and asking for a second opinion. You might also be able to count the "40 days" from the day you saw a doctor and got given the results.

You might need to start making a list for PALS. Add to it the fact that you have been told an MRI is "too expensive". That is just not on. Fair enough that you have a cheap xray first, but if that doesn't show anything then you have every right to an MRI as that will show early damage years before it lights up on xray. Also if PALS can find out who actually reported your xray that would be useful. If it wasn't a fully trained radiologist who has an interest in musculoskeletal stuff, then get PALS to try and get your xrays reviewed by someone who does. I actually paid for a second opinion on my supposedly "normal" SI xray, to discover that the expert thinks it actually shows partial ankylosis (the beginnings of fusing).

Not sure if anyone has said, but as well as doing your family history list, you might want to ask family members who their rheumatologist is, and whether they like them, and think they are being treated adequately. If any of them are under really good doctors who are involved in research, then it might just make sense to ask for referral to the same team - could open up a lot of possibilities for them following up your family a whole lot closer given the number that have AS.

....

Lizzie - Was just reading a rheumatology symposium write up. Found this, and think we can relate.

http://www.rheumatology.org.uk/includes/documents/cm_docs/2010/f/final_programme_2004.pdf

BSR: Rheumatoid arthritis from the patient’s perspective Pentland/Sidlaw
Chairs: Rod Hughes and Enid Quest
• The patient as educator Jane Dacre
A discussion of trained patients as educators of doctors and other healthcare professionals.
• The patient as expert Kate Lorig
When one is diagnosed with a chronic disease life changes. Corbin and Strauss have identified three major management tasks for people with chronic disease;
medical management, role management, and emotional management. At the same time patients have told us that they need two types of knowledge, medical knowledge and knowledge gained from the experience of living with an illness.
Health care professionals, are experts at helping people with medical management but are less adept at helping with role and emotional management. Patients who have lived with and managed a disease over time have much to offer each other.
This is especially true if this is done in a structured setting which allows sharing in a non judgmental atmosphere.
This talk will discuss the sharing of expert patient knowledge and will include some of the data we have collected over the years on the similarities and difference in professional and patient led groups.

• The patient as recipient of treatment Jenny Donovan
Jenny will talk about research which shows how patients make rational and sensible decisions about the medications they take for their joint symptoms, based on the information they have available to them. She will also present evidence about how doctors and patients can have very different perceptions of issues discussed in consultations which can lead to confusion and dis-satisfaction, and also some work we have done very recently synthesising qualitative research studies which summarises the contribution that qualitative research can make to rheumatology.

• How do patients prioritise outcomes in RA Alison Carr
Clinical management is aimed at achieving a good outcome and most clinicians have an intuitive feeling for what constitutes a good outcome in their patients but this might vary between individual patients and even within individual patients over time. Definitions of good outcome from clinical trials are based on disease based measures of outcome (acute phase
response, pain) and increasingly on patient-based measures (function, quality of life) but do not take account of the ways in which patients prioritise outcomes in relation to: the stage and severity of their condition, their expectations or adaptation. This talk will present evidence of patient
priorities for outcome and discuss the implications for the ways in which outcomes are measured, analysed and interpreted.



Hmmmmm. Impressive. This is being echoed in the GP magazine 'Pulse' - and is strongly echoed on twitter by physicians and patients, both, and on dedicated 'conditions' sites, like SAA & NASS. So, good to see this presentation - note date 2004! Been cooking a long time and still in development...

Had to smile at this one: (Good idea - but had to smile!) BSR Special Interest Groups
• arc/BSR Education SIG Carrick 2
Convenors: Lesley Kay and Andrew Hassell
The aim of the education SIG is to start a network of Rheumatology health professionals who are interested in the delivery of Rheumatology education to students and practitioners, and in educational research.
This is a joint initiative between the BSR and arc. In the first session we plan to outline current work of the arc education sub-committee and the BSR Education and Training Committee, and give some examples of current educational research.



OK Lizzie, go be proactive (as 'Pulse' would have patients do!)

Hi, liz:



Rheumatologist is WRONG.
GP is RIGHT; practically the definition of AS in women.
Don't go to this rheumatologist anymore!

Please do not delay in obtaining Carol Sinclair's book and following it both long and faithful enough (10 months--test test test), if salient symptoms do not decrease, THEN there could be some question about the GPs diagnosis (not going to happen).

Can't a GP order the B27 test or is the familial disease related to this antigen? Would be interesting to find out, but whether B27+ or not, You are in the club.

I don't subscribe to alkaline diet, unless it is also highly laxative, however, good to try what works for others within Your immediate family.

If You are really impatient, there is a FASTER way, but it requires a lot of discipline.

Many of us have psoriatic lesions and develop both pustular and scaly psoriasis on occasion, before following diet properly.

In fact, You don't qualify as PreAS (because You are ALREADY FUSED in a very characteristic AS-way), but here is a list I am working on:

I would expand a little, upon Professor Ebringer’s list for Pre-AS so that individuals can help themselves “nuance” a preliminary diagnosis for themselves:


Do You have IBS/digestive issues?
Are the pains asymmetric or symmetrical?
Have You ever had iritis?
Or plantar fasciitis?
Are there X-ray changes to Your SIJs?
Do You awaken with 'morning stiffness' that relents upon hot shower or movement?
Are Your pains cyclic or constant?
Do NSAIDs seem to relieve the pains?
Noisy joints (crepitus)?
Have You ever had some degree of hypermobility?
Any blood relatives been diagnosed with chronic UC, AS, PsA, RA, or any other chronic inflammatory disease?
When You eat, must You drink much more than 'normal' people?
Dry eyes (common conjunctivitis), parched often--thirst?
Any common or intermittent psoriatic lesions--scaly or pustular?
Any 'sausage digits?' Toes?
Pain at the 'core' of Your body so You cannot turn at the waist so easily without feeling like You have a cactus for a spine?
Trouble getting up from a seated position?
Night sweats?
Ribcage pain, especially at sternum?
History of pneumonia?

Even several positive answers cannot be definitive, and it is not likely that anyone with AS will have experienced all of these symptoms, but these are just a few more of the indicators that people can use to determine whether they ‘might’ have AS.

More and more people seem to be HLA B27 negative, yet develop AS. However, fully half of the confirmed AS/B27 negative patients who checked in to the AS Middlesex Clinic, retested as B27 positive, so it is obvious that the inexpensive serological test that is commonly used is terribly flawed, producing way too many false negatives. It is no wonder that even physicians are confused about the meaningfulness of this test. The truth is quite simple, however, if positive it is almost certainly AS (because without indicative symptoms this test would not likely even be performed), but a negative result does not rule out AS.

The problem with Early-AS is that physicians are reluctant to attach this label to their patients, so would rather delay an ‘official’ diagnosis but cannot say exactly that to the patient, leaving them to wonder or find some guy who will surely call the condition fibromyalgia. And the disease progresses without finding any way to delay the permanent skeletal damage; ‘benign neglect.’ I want physicians to instruct their patients how they can participate in their own care enough to avoid the first obvious fusion in AS: SacroIliac Joint bridging, or SIJ fusion.

In addition to the above list, of course, there is the food journal; keeping assiduous track of what we eat over a period we experience flares and sporadic remission, noting our daily pain and stiffness levels. The punchline would have been for me that fried rice meal I had many years ago that resulted in the worst flare I could have imagined up until then. That lasting impression made me stop eating so much fried food, which only helped a little, but noticeably. I don’t know what I would have done, had I known about starches back then, but I am certain I would be much better off today.

Now the opposite of the food journal might be fasting, but most people are as unwilling to fast as they are to give up their starches. But fasting is not nearly as permanent and I did learn of fasting long enough ago to greatly slow the progression for a few years, but laziness and career finally caught up with me. Drastic times call for drastic measures and if a flare is not drastic I do not know what is (for me it was iritis!). The difference is that there was nobody around to tell me that “fasting absolutely reduces AS symptoms,” as I am telling You now. In fact that 20 day long fast put me into a considerable and sustained remission that changed my life and allowed me to become athletic again whereas the wrong food and wrong drugs did the exact opposite. A person should only fast if they can do it safely and it will not require 20 days but only about 6 to demonstrate to the patient two things, once the symptoms disappear or are reduced: 1) They almost certainly have AS, and 2) There is a STRONG connection between food and AS.

I hope that You will experiment with diet and even fasting if You are up for it; as You will certainly discover a world of difference.

HEALTH,
John

thanks all for your comments.

saw the dr on fri and he asked me to look up fibromyalgia (the usual fob off story) so i went home and did a list. printed out all the infomation as req. and went back this morning.

he has refered me to an AS specialist in Aintree Hospital, my appt is the 26th sept- sobs- ages away but if i cant get sooner i cant get sooner. he said to take the pain diary with me, all the info i typed up- symptoms before flare and during flare and the food diary i have completed (all since june). so least tnhe ball is rerolling. i have filled a complaint with pals (my own dr is unaware of this)

dragon slayer you asked:

* Do You have IBS/digestive issues?
yes i have been tested for coeliac disease twice, chrons disease three times and have had stomach ulcers in the past. i have terrible IBS symptoms (today is a bad day!) i am very sensitive in that area.

*Are the pains asymmetric or symmetrical?
the pain is right across my lower back and round my hips. my hips alternate on which one wants to be particularly playful. they are very clicky and can sometimes grate (more sensation than noise) the pain goes up my spine but not fully stops round the ql area.
i have always had pain around my sternum since i was a child, can sometimes feel stictch like in my chest and hurt when i breath in. started when i was about 11. drs have put it down to my asthma. iv found if i breath through it (despite the pain) it eases quicker than if i do shallow breaths to avoid the pain.
during this flare (of whatever i have) i have arthritis in my joints, it migrates around them alternating on which one is more swollen or more painful.

*Have You ever had iritis?
iv had red eyes, light sensitive eyes etc during this flare. in the past when i had a swollen knee i was about 22, i had a major migraine, red eyes that were very swollen, i went blind for a week. they put it down to my migraine i now wonder if it was this. my left eye keeps going fuzzy and red but when i mention dr just says will be migraine.

*Or plantar fasciitis?
my mum and an aunty have this. however i do have pain in the arch of my foot on occassion depends on the shoes i have on but nothing that alarms me too much.


*Are there X-ray changes to Your SIJs?
appt minor signs of wear and tear (but what are they?) thats all the rhuematologist wrote on his report to my gp, n that there was slight variations to the spacing. but my gp said all fine as it hasnt alarmed him (however has now refered me for a second opinion)

*Do You awaken with 'morning stiffness' that relents upon hot shower or movement?
yes since i was in my early teens. im really stiff and gradually losen (spine n hips) however at the min if i rest my spine kills, if i move spine eases but joints hurt)

*Are Your pains cyclic or constant?
constant pain in back and hips. arthritis type symptoms in joints are all new. although i do have a hist of random swollen joints for no reason n forcing mum to take me to b checked n being told oh it will b a sprain. coincidental really.

*Do NSAIDs seem to relieve the pains?
not really. it seems to at first however not completely and my jaw etc has started reclicking daily. as for the pain levels no, iv got a lot of my joint movement back (on naproxen, co-codomol, ametripteline, omeprazole, n a few others). my joints swell n seize the more i use them but i have got a lot of the joint movement back whereas at first i couldnt move them at all.

*Noisy joints (crepitus)?
yes creaky clicky etc

*Have You ever had some degree of hypermobility?
in my arms yes

*Any blood relatives been diagnosed with chronic UC, AS, PsA, RA, or any other chronic inflammatory disease?
yes grandad, 2 aunts, 1 cousin, 2 cousins to mum, and 2 of their daughters all with AS

*When You eat, must You drink much more than 'normal' people?
iv never noticed tbh

*Dry eyes (common conjunctivitis), parched often--thirst
my eyes do iritate me more than other people. feel like i have something in them reg. and i do get quite thirsty but nothing iv really paid much att to

*Any common or intermittent psoriatic lesions--scaly or pustular?
my ears are full of psoriosis, i get it on in my brows n on my forehead, also on my scalp.

*Any 'sausage digits?' Toes?
nope

*Pain at the 'core' of Your body so You cannot turn at the waist so easily without feeling like You have a cactus for a spine?
i do get pain wen turning, but i dunno how to explain the sensation properly.

Trouble getting up from a seated position?
yes i have to get up slowly, as it hurts my lower spine and coccyx when the pressure is removed. takes a while for my joints to relax as can be quite stiff esp if i have been sat for some time. i reg have to readjust myself constantly to relieve pain when sitting.

*Night sweats?
i sweat quite a bit even if im cold i can be quite sweaty

*Ribcage pain, especially at sternum?
oo c above

*History of pneumonia?
I had it when i was 5 nearly died from it.


im defo going to give the starch free diet a go. im going to look up all that info now.

thanks so much guys

x

thanks again everyone for all ur help and support x

Lizzy, all the questions dragonslayer asked are really relevant and will help get a diagnosis. Make notes of those things, because the rheumatologist needs to know all the "yes" answers to those things too.

Concur 100% with cemc's recommendations. Very important. And the KA pain map 'might' also help - But that Q&A from John, and yr responses are crucial.

thanks so much id copied and pasted them into word and will make it more readable for the rhuematologist lol.

the dr i saw today at the disease clinic asked similar questions tbh and said she will be sending them off to the report, esp about my eyes and mouth she kept coming back to it, and eyeing up my psoriosis.

fingers crossed im finally getting somewere.

had my first proper examination today (physical wise) with tons of questions, she read through all the literature i handed her and my own notes and pain diary and has completed a report for the rhuemy. shes done loads more autoimmune related bloods today and those results will be sent over.

im also under a cardiologist now as my 24 hr tape showed some changes on the ecg to my heart and that. so apt it dances to its own beat lol. fits with my personality.

she suspects it was rhuematic fever and its kicked off my heart problems and AS/Behets disease. shes torn between the two.

hopefully by the end of sept il have got sumwer!

thanks guys x