Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Never thought I'd leave this club - but I am

This time last year was the worst time of my life - diagnosed with as - couldn`t walk - 20 minutes to get out of bed in the morning - near divorce (due to pain induced depression)

After coming here, learning alot and not letting the what I think "still undeveloped medical profession" take my hopes away I embarked on a bit of self diagnosis.

No starch helped - but I knew this was just subsiding the pain rather than cause.

I spent hours sifting through archives from wacky doctors that have been laughed at by the "proffesion" and learnt huge amounts about immune system and its imbalances in everyday life.

I have been 100% pain free for 4 months - I asked a dentist to remove a tooth that looked perfectly good and didn`t ache - but I had a suspicion because its sensitivity was dull. I could have easily given up when the first 2 dentists refused. I`m glad I didn`t - it was hugely infected.

I didn`t loose any pain for the first month and my hopes were dashed - but slowly slowly I have lost the pain, re introduced starch, stopped pain killers, started running, surfing and a few weeks ago I realized that I had forgotten about the condition.

My knees are good, heel good, not lethargic anymore either.

My reason for coming back is not to be smug - Please if you have anywhere (especially teeth) that you minutely suspect might be harboring a silent infection - get it looked at.

I still think ankylosing is a term that doctors can use for reactive arthritis - when they cant find a reason for a reaction.

Thanks

John

Way to Kick AS. Congrats.

Have you given any of the medical professionals you saw an update? This could help broaden their horizons.

John,
It's good to hear how well you are doing. It's always wonderful when someone feels better. Thanks for sharing what worked for you; maybe it will help someone else.

Here's to continuied health for you!

Karen

That is truly great, John!

I went back and looked at some of your earlier posts to get more of your story, magnificent that you were able to be your own best doctor and figure out that the problem was your tooth.

I see that you are HLA-B27+, but do you now doubt the diagnosis of AS? Or even Reactive Arthritis, which is what my diagnosis was (which I am not all that confident is correct)

Thanks for keeping in touch with the group, even though it would probably be more fun to be out surfing, do you think you can back to playing rugby?

Hi,
I'm so thrilled for you and very jealous. I'm still trying to get my head around what exactly is AS. I can remembering reading on a official Arthritis info sheet, that those with the AS gene are fine up until they get a bowel or bladder infection which then can trigger off the AS and all its symptoms. So I'm thinking whether its Reactive Arthritis or AS then I need to ensure my husband (who has the AS) to be infection free- or is it too late- like once its started and can't be stopped. My husband AS pains were very minimal until he had a stomach infection (caused by too many Voltaren)- this was treated with Anti-biotics, but since then he has been in constant AS flare-ups.
Is your teeth idea associated with getting filling replaced also- or just infected teeth?

Sorry for all the babble- I jusy get very confused. I'm very glad for you though, and will check out my husbands teeth ASAP.

THank you for the update.

Kind regards,

Emily

KB,

Was this a routine dentist that finally agreed to extract that tooth, or was it a specialized dentist (I hear much about biological dentists, but know little to nothing about them)?

Were any methods of diagnosis (x-rays, scans) used to confirm your suspicions, or was the extraction of the infected tooth based solely on your suspicions?

I'm curious because I have some problems that could very well relate to something dental, but every dentist (three visits) and oral surgeon (two visits) who has examined the suspect area gives me the "all clear". However, signs have finally appeared within the last nine months that it could be something dental. However, a little bit the problem is that a dentist would not be able to get near my mouth to perform an exam. I'm headed off to the neurologist (scary) to find out what type of scan might pick up any jaw or dental related infections and possibly to get something to manage the pain. The next time my facial neuralgia increases significantly in pain, I don't know if I'll be able to stand it and I need to have something at the ready.

Your response to these dental questions would be appreciated.

John, I'm so glad to hear you're doing so well!!

Hugs,

john,

i am so glad you decided to post this.
as you said, if this post helps even one person figure out their own mystery,
then you have done a great service.
after 10 years, and 4 rheumies that all seem completely baffled by my mysterious tendon injuries, i feel deep down in my heart that there is some smoking gun (like you found for yourself) and all i need to do is find it,
or find a doctor that can find it.

so your post gives me great hope and renewed energy to keep searching,

now get out there and LIVE!
which i'm sure i don't have to tell you to do.

sue

Thanks for all your kind comments.

The tooth was the only one I have had filled - so that was one reason for suspicion - it was slightly sensitive.

It was the kind of tooth that I could have easily put up with for the rest of my life but my suspicions were too much.



this is a wacky idea that you can read - then forget about
http://www.rheumatic.org/teeth.htm

Cheers

John

This isn't meant to be as rude as it will sound, but I hope you stay gone...