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

thanks cemc il contact pals first thing in the morning.

im still keeping my pain diary etc as the new rhuemy may want it, iv also got my fam hist written down and previous tests/med hist.
fingers crossed i get taken more seriously in future.

god knows how my relatives cope with this pain, my grandads suffered quite a lot, he seems a lot better since he been taken something called serrapeptase. a new lease of life he says. my aunty thelma well god love her is all i can say think thats why im more scared, she came to visit and was telling me 'ooo you remind me of how i was at your age' i was secretly thinking to me 'hope to god you dont remind me of me at your age'. its really worried me. she has full spinal fusion, with the hunch at the top, and has a bracket/brace thing supporting her head in place as her neck cant do it.

Im going to try the diet as well, help myself as much as poss. but im worried if i go with non of the symptoms the rhuemy wont be able to get a full picture.

just trying to keep my pain meds topped up as much as poss really tbh. i tried working tonight, sick of pinching money off my nan to feed the kiddies and was only a 40 min job for £35 - a weeks shop really if done sensibly.

i was in agony all my arms back and hips and totally wiped out after it. but least i can feed them myself now lol. my wrists are totally swollen (but again not red) its like a solid swelling, hard to explain really.)its all in my hands and feet tonight too which iv not had before its been main joints such as knees, ankles, hips, elbows, shoulders and wrists. fingers crossed this flare comes to an end, i read somewere they last around 3 months? well iv had it since the end of june. i can cope just about with the back and hip pain iv always had, im getting more accustomed to the joint pain, but coz it moves around each joint its a bit harder tbh, whereas my back and hip pains always there constant so u can adjust to the levels, now n again it increases and i have to up my meds but then i get used to it again and so on like a cycle.

anyway my ramblings are over.

thanks so much everyone for being so understanding and supportive.
i felt so alone and emotional tbh. my grandads been great i have to say he has. my bf has been brill even helping me with the children (only been together 8 months and hes havn to do dirty nappies and put babies to bed lol) dedication for ya way to know uv found a gudun i guess. but my dads basically treating me like im putting it on and being a hypercondriact. coz its not something they can physically see they cant really relate to it. all i get from my mum is (as supportive as she can me) like its a competition well im having surg on my knee in sept, yes my knees sore liz, why dont you just start getting on with things now, were all in pain liz iv had this cough several months now, hmmm maybe i have what you have (mums one of them got everything if someone else does and is quite competitive lol) i keep having to remind her its not a competition we can both be ill. but its the way she doesnt understand my fatigue and my feaer of the chill cabinets in supermarkets if i go near them the pain in my joints skyrockets!

anyway i am officially going to stop my rant and get to bed lol. really sorry but i am really greatful for all your help and support everyone.

thanks so so much!

Hello Lizzy,

Sorry to hear about the past... in reading your story, I would lean to the conclusion you have AS. But I am not a doctor.... but many of your comments really hit home.

I think it may be very good to look at your aunts diet if it indeed works for her... many here follow a No Starch Diet... even if you do not want to follow any of these diets... eating a healthy diet and avoiding much of the junk food in the American SAD diet would help.

Hope you can find some answers so that you can hold your baby... that is too precious to have to give up.

Take care,
Tim

Yes. That is right on. With your complaint use PALS - I used PALS, and set up a full meeting at the hospital (16 of 'them'!) my complaints were in multiples. Ended up with very big apology from 'them', their mistakes ALL admitted to - that was Nottingham. Right mess up they made.

Use PALS. But get your referral to Manchester. Manchester is where you'll find an excellent spondy centre (put it this way, Manchester is well spoken of. Otherwise Leicester. I used Leicester.) Remember, you can go *Anywhere in the UK - your right. But you'll possibly want to be to nearer home than visiting Leics...!
Good luck.

Molly, I haven't told you lately how very much I appreciate you. Thank you for all this work on Lizzie's behalf. I don't know the English system well enough to give her the kind of information you and cemc are giving her. Both of you are absolute gems!!!!

Love and hugs,

had my xray results

apt minor wear and tear of these joints but no major fusion of the spine. until a fusion of the spine is seen they will not diagnose AS and until that point they will just monitor my pain levels will pain killers. so literally until my spine fuses iv just got to take a ton of pain meds. the spacing between joints has differed but not enough for them to diagnose yet. furious. they still wont do the blood test as obvs it will show up if relatives have it (which they do), and an MRI is too costly to do at this stage apparently. so iv just got to stay in pain. how nice!

I really dont know what to do now tbh. I just feel like i have hit a dead end. They didnt say what the radiologist had seen on the xrays that made her ask if i had had surg. and despite me presenting with the AS symptoms and mimiking an AS patient until there is fusion they feel the medication/treatment for an AS patient would be unsuitable.

so its literally a waiting game isnt it.

fabulous

just go top myself now. im in flippin agony and they just dont seem to care.

i wanna cry!

No. Not on. MRI Saggital STIR tau1, tau2 is the ONLY way forward. Too EARLY yet to show up typical AS bony changes. Another good one is the Nuclear Bone Scan - mine lit up like a C'mas tree! (No, nothing of particular AS evidence showed up on my X-Rays).

Now. Get that complaint going - liaise with PALS

See your doctor for a referral to Manchester - first checking out 'which' of the AS consultants you are going to see there - so, you can give yr doctor a name

Ask the hospital for the FULL radiologist report AND copies of ALL the radiographs - these 'should' be FREE OF CHARGE so long as you hit it soon (only given a short time span for copies of rads - they'll be given you on a disc, which you can copy for multiple use!) Do this ALSO through PALS - in fact, get a COMPLETE copy of your file - everything

Get an appointment WITH PALS

Now. Go give your babies a wee cuddle and then GO DO -

Ohhh - Thanks Kat. That is kind of you. (You know though how I love 'diggin'!) Yes, it's great having cemc as well, as I tend to forget bits an bobs and cemc never forgets. A nice quiet voice in the backgroud comes up with nuggets.

Thanks hon - you're a dear.

Take care -

((Molly)) You are amazing....as usual. I was going to send you a message to that fact and read Kat's post and just wanted to echo it. We all learn from you. I am so glad you could help her.

Hope you have a glorious day.

Hugs.
Possi

iv rang the rhuematologists secretary she hung up on me - nice lol. i will try again. pals are getting back to me. off to do my alkaline shopping at least.

im going to post my fam history, current symptoms etc at my own gps hopefully they will ahve a read of it and see what they think but il defo take it with me, with printouts of the suggestions you have all made and links you have given me.

thanks so much xx

Lizzie dear - now, 'smile' - print out info for your doctors. They won't be clicking onto links on their computers! They have 10 min appts, back-to-back, hellish days, suffer burn-out, and aint gonna go home threading up links that patients give em...Lord luv ya gal. :))

Print up for their benefit the major items of info. OK. Let's see. The Screening MRI stuff is important. The Women With AS an Pregnancy is important. The EULAR Handbook is crucial, though a helluva lot of paper. Hmmmmm. Full Handbook might be daunting. Could skim through and haul out to print the important bits - like, tell printer to print pages whatever to whatever etc (I can do that with my printer). Go through and see what else you'd like em to read/learn.

Whilst you'r printing, don't forget the info for that clonker of an uneducated rheumy you saw. Got to get 'him' EDucatED!!

Huzzah for PALS. Two prongs there: Complaint and the Full File WITH ALL copies of your X-Rays.

Good job gal.

Just thought of summat to help nxt rheumy you see. Here on KA. See menue, left hand side, sixth item down, Pain Map. Click on that. You'll find outline female body, front and side view. Print it out, suggest three copies. GP, nxt rheumy and one for yourself, or, give one to the PALS to accompany/filing of yr complaint. Yes. Four copies. Now, colour in the parts that pain. I use coloured crayons. Red for pain. Useful at-a-glance pain map.

Use all your anger to focus on your own win-win of a most disturbing and stressful situation. Give yr kiddies another hug, have a cuppa tea (nowt like tea is there?) and take care -

P.S. Tell em you can't live on NSAIDs, NSAIDs have horrible gut reaction problems (for many though not all persons). Your pain levels have to be properly addressed, that, and you *need a correct diagnosis. But NOT at the hospital where you saw that particular rheumy - is OUT. (Colleagues, treading on toes etc etc, all that scenario. Yes?)