Ankylosing Spondolitis.

saffiedale_2

hi all, just to say that i went to see doc price at cannock:mad: what a rude, vile man. was kept waiting in pain for two hrs. then he was rude, never answerd my questions.:eek: he just opened his arms when i ask how long till i get enbrel.. he never looked at me. he asked two questions. when i noticed that id got scholeosis in lower spin too, i asked and he cut me dead.:mad: :mad: i carnt belive my hubby and me just did not say anything? then we were snapping at each other cuz we felt we had taken a step back.?:rolleyes: so now im going to report him.:eek: not like me. .....

saffiedale_2

whats happening on here? my a.s. buddies given up?:eek: hope the sun is making you all feel better and maybe are out? huggggggggggggs to you all.

Guapa1

Hi all, I don't have AS, but researched it extensively as the symptoms seem to fit me very well. I found a site called kickas, have any of you been on it?

Some of the users have found relief through a complete and total diet change.

saffiedale_2

hi there, guna look on there.:j why have you been told if a.s. or not? mind you i recon my doc seemed unsure the otha day?:rolleyes: yet xrays ect say yes???

Guapa1

Well I was researching back pain, and came across AS. I read the symptoms and could check nearly all of them off. Some things, like the chest pains, and knee pain I hadn't even put together with my back pain. I've had an xray of my lower back and they said it was fine.

Reading through some of the stories though, it seems that can happen for the first few years until they see actual fusing.
I'm saving up to get my own MRI done. I'm fed up of relying on the NHS.
In the meantime though, I'm trying to incorporate this diet into my life, but it's hard as it means a complete lifestyle change. I've also had to move back into my mums as I can't work because of my pain, and we have a loose arrangement that I'll cook and she buys.

I can't cook 2 different meals, it takes me the whole day to make one!
Here's the link http://www.kickas.org/

saffiedale_2

when i had mri it never showed? was a normal xray of sacriolac joints that you could see it? so what did blood test show?:rolleyes: i have found a new pain.:mad: it was in left side of back, right into bottom.:eek: then in leg. like sciatica but ten times worse,:eek: :eek: :eek: its much beter now im up? so do you have the raised markers in blood?

saffiedale_2

hi all just found out that esr count is 36 and crp is 10? i know esr should be 9 ish? and some one with a.s. or rhum arth should be around 8? tink normal person crp should be around 5? im just waiting for the funding now. when you read about enbrel it worries you bout food ect on ai. holidays. maybe im being daft? any help here???

stef240377

At its worst and constant my partners esr was in the 80s with crp around 31.
This didnot change with Humira. Enbrel first injection today so heres hoping.


What is it that worries you regarding food saffiedale?

saffiedale_2

stef240377 wrote: »

At its worst and constant my partners esr was in the 80s with crp around 31.
This didnot change with Humira. Enbrel first injection today so heres hoping.


What is it that worries you regarding food saffiedale?

hi steph, that is high.:eek: they say you got to be very careful? no soft cheese, blue cheese,all meats cook well, ok thats norm.:rolleyes: but im worry bout holidays ect. you know like meat in sauce ect,:eek: also cuts, scratches, am i just worry too much? how is he today? x

stef240377

When the nurse was here yest overseeing terrys first jab of enbrel i mentioned that Chalam had said to treat body as though it is that of a pregnant woman and she said it is a load of tosh. She has regular meetings with NICE and other pharmaceutical companies and it was regulation to start with to recommend cutting back on foods known to give people with low immune systems dodgy stomachs however providing you know how foods have been brought from and stored and how they have been cooked there should be no problems the same goes for drinking alcohol as long as it is in moderation then there are no known side effects.

However saying that if it is eating abroad only go for foods you know will have been cooked to a point where contamination is so low you have no worries. The nurse said the only thing you should really be concerned about is not having too much of a good time and forgetting to inject.

As for his health, the chostochondoitis is starting to come on again, terry has mentioned today about the return of the tightening in his chest on breathing and severe pain when coughing and sneezing but we have got to the stage where each day is much of a sameness and we just get on with it rather than thinking oh dear what does today bring.

Hope all those others who pop in but dont leave a reply are doing ok - not much to say to those who do as your all in the same boat and must get fed up of being told to keep your chin up.