Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group AS onset, progression, etc...

Colin,

if you want to help folk and get them and yourself with that I'm new feel, welcome new folk......

I've had too many episodes of death by pizza to ever think about eating it again. Pasta is another best avoided. rice is a bit lower down that list in terms of bad effects but I avoid it most of the time.

PS I 'm a b27 neg, long history of IBS trhat from 1998 went to U colitis.....peripheral arthritis and eye inflammtion. the general run of the mill eye stuff dry eye ( auto immune ) so get some dry eye drops from the pharmacist. You may need to try different formulations to get the one right for you.

You should mention this to your PCP/GP and get an eye check with an eye specialist ensure it is dry eye and not something else ( iritis/uveitis ) and gives them a base line of your eye health.

Once you've had the different eye conditions you know what they are by the pain and redness....

When my son stays over at his friends he often spends the next day or so regretting it in the small room. I just gently knock on the door and ask him "pizza?", he laughs and replies "how did you know?"......pizza makes the joints growl and spine burn with electrical spasms painful many episodes later never again.

If you want pizza try and make your own using a much better for you quality wholemeal bread base. It's not the same but you are less likely to suffer as much.
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B27 negative disease is known to affect the neck and shoulders with some SI itis,.......more likely to have peripheral disease, more likely to have a co condition like IBD or psoriasis. Put another way less likely to be classic AS with the ascending inflammation and ankylosis.

Be aware though B27 neg disease can also be the full on severe ascending AS and identical to classic severe aggressive disease. ( we did some polls here afew years back ) . The problem with the AS B27 neg disease is it is not seen as much as the numbers are lower so the studies do not get the full picture.

If you search around.....b27 neg AS average age of diagnosis is late 30's with some 8 years ( memory ) of symptons. Age of onset is variable with some having issues since childhood some alot less.

With me infections and injuries have been the big triggers in back stiffness joint swelling and gut issues. However big gut changes were driven by nsaids....why I do n't like them long term for anyone.

If you find the nsd/lsd helpful then you should have a good go at it. It kept me resonable from late 80's through to around 2000 then things just changed ( I was hitting 40 ).

My son was getting pretty bad and he's ok now ( not 100% but active and well ) the other thing is with a chest infection he's off to the Dr pronto and anti-biotics......his feet do not hit the floor and for him erthymycin. For me flagyl.....

From a threatened colonoscopy likely U colitis and at least spondyloathropathy and being constantly ill severely stiff and swollen and in alot of pain he's now a pretty much normal knock about kid.

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Rheummies are more interested in joint damage/ankylosis, watching the systemic effects ( blood tests crp and esr usually ).

Remember to get a diagnosis it's 3 months .... when does that start ?

The rheummie should step in with medication at some stage soon.

Rememeber if it gets too bad go see the PCP/GP beter to see them when you are bad than when the episode is over.....

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Keep asking and posting mate, I do n't think there' anything unusual in what's happening if you have AS or SpondyA. B27 negative is a bit different but still pain stiffness and fatigue.

Dave

Hey everyone,

Thanks for all your advice. The funny thing is, this thread is as old as the hills. I wrote it at least several months ago, and I have no idea why it suddenly resurfaced.But I'm glad I did.

I've come to a stage of acceptance of my condition right now. My pain is mild compared to many on this site, it just seems to want to invade every inch of my body - from my forehead to my ankles. I don't know how that bodes for the future.. but i can't dwell on that... Anything can happen in the future. I could get hit by a car tomorrow. Children starve to death in Africa every minute. Planes crash, trees fall, fires burn, yet life goes on. So does mine.

I'm working on the radical acceptance thing. But I've been in a lull for a little while now and that could change when/if things get bad again.

But I'm also trying to cultivate an awareness of my body, work on natural therapies to keep it healthy, and work on finding the root of this illness (i refuse to call it a disease)... hippie stuff like that.. haha.

I'm seeing a highly regarded doctor of chinese medicine, and I just started working with a naturopath. I do a hatha yoga class once a week and have started going swimming and using the sauna at the community centre. I eat very little starch, mostly veggies, eggs, fish and soy. Take fish oil, vitamin C, and just started taking sterols and sterolins - http://www.drhoffman.com/page.cfm/216 .

So I'm doing whatever i can to nip this in the bud, it seems... but also doing whatever i can to mentally prepare myself for what it might bring in the future and how my life might change. I've already had to give up freeride biking, and I'm skeptical whether i'll be able to snowboard this winter. All I've done all summer are short hikes and walks... which is pretty tame for someone like me who loves to climb in the mountains. But I'm trying to stay open.

I question the ability of medical doctors to help me with this condition, save for ones like physiatrists who deal with physical pain. Save for a few people on here who seem to do very well with anti-TNF drugs, most medications seem to do more harm in the long run than good. Right now I'm in diagnosis limbo... so those aren't options anyhow.

Soooo, I'm done blathering now. Just trying to cultivate a positive attitude and live one day at a time. It takes incredible strength to live with this kind of uncertainty. And my hat goes off to all of you here for doing it so well.

Namaste, metta,

Colin

hi colin,

you do sound like you are in a much better place already.

i think many / most of us are a bit overwhelmed initially,
and it takes a little time to move past that stage,

sounds like you are already moving to the next level.

when i talk about patience and acceptance, it took me years to reach that stage, and i still have times when i regress, so these are things i tell myself as often as i tell others.

it sounds like you are discovering the things you need to do for you,

that is so good to hear,

and don't worry if you get a little overwhelmed when the pain levels go up,
i think that is normal (for many of us). you'll find your bearings over and over again, i believe, that's how it is for me. a constant journey of renewed discovery....how's that for 60s talk

sue

Hi Dave

I appeciate the information.

I've only been dx'd for a little over a year and at first did not realize that there was any real meaning in being HLA b27 negative. It was not explained to me.

I found the info you provided on HLA B27- disease interesting.
I have terrible problems with my neck and have some counfouding circumstances (whiplash from a car accident) and also many herniated discs in cervical spine and a lot of pain and stiffness and facet syndrome.

It is good to see there are such knowledgeable people on this site

Jessica