Ankylosing Spondylitis

[Minnie]

I recall someone here posting in another thread quite a while back, that this is a diagnosis they have, but don't recall who it was. It's looking like this is a soon-to-be-made diagnosis in our house. I'm wondering if anyone who deals with this might be willing to share their particular experience with AS - feel free to PM me if it's not something you'd like to put in this thread.

Just hoping to get a bit of first hand knowledge so as to give us even the faintest idea of what's to come.

[Ducay]

Google: Ankylosing Spondylitis site:calgarypuck.com

http://lmgtfy.com/?q=Ankylosing+Spon...algarypuck.com

[Jacks]

I've been dealing with it for about 20 years. It affects some people differently than others, the way has attacked me is a bit unusual so I'm not sure how much help I would be. Happy to answer your questions if you like though.

[OutOfTheCube]

This sounds like something you'd make up to get a weekend off work.

And in that, I mean it has a silly name. I googled it and it doesn't sound fun. I have little advice -- my mom has suffered from fibromyalgia for twenty years though, it sounds similar at least. She needs lots of rest, can't over-exert herself, etc. Not sure how similar the two conditions are.

[pylon]

It seems minnie, you have the worlds worst luck when it comes to medical ailments in your household.

Not a criticism, merely an observation.

[stazzy33]

Originally Posted by Ducay

Google: Ankylosing Spondylitis site:calgarypuck.com

http://lmgtfy.com/?q=Ankylosing+Spon...algarypuck.com

It always amazes me how tactless some people can be...

Best of luck with the situation Minnie!

[Puppet Guy]

I know that Mick Mars from Motley Crue has this, and it's resulted in bad scoliosis for him.

Found this article where he talks a bit about it. There's a lot of rock badness thrown in, but he discusses the symptoms and effects:

http://love-it-loud.com/retrospectiv...g-spondylitis/

But for the most part Mars was known as the quiet one from Mötley Crüe, often remaining silent in the background as the other three caused mischief and mayhem around him. “But the more successful we became, the harder it was to enjoy the rewards,” Mars continued. “New ankylosing spondylitis symptoms kept appearing: Something called “iritis” set in, producing bolts of pain in my eyes whenever I looked into bright lights, like I did onstage every night. And my lower spine seized up and froze completely solid, causing scoliosis in my back and squashing me further down and forward until I was a full three inches shorter than I was in high school. That’s why I never take off my platform boots. I don’t want to be a pygmy.”

[Dion]

That sucks Minnie!

Your family doesn't deserve this. Hope your family member can get the help that is needed.

Hope this link is of some help.

http://www.arthritis.ca/page.aspx?pid=915

[Locke]

I feel like I should be extra careful about airplane engines falling on me just because I frequent the same message-board as Minnie.

I could be eaten by a shark in Lake Bonavista just because of proximity to Minnie.

[Minnie]

Well, we are right on the flight path for the new runway...

[Dion]

Originally Posted by Minnie

Well, we are right on the flight path for the new runway...

[Cali Panthers Fan]

I don't know how you feel about chiropractic, but coupled with physiotherapy and prescribed exercises, it can help keep the progression of AS at bay. You can't do anything about the joints that are already fused, but you can reduce the rate at which future joint fusion occurs, and also maintain as much function as possible throughout the spine.

That being said, I'm sorry to hear this news. Good luck to you.

[Ducay]

Originally Posted by stazzy33

It always amazes me how tactless some people can be...

Best of luck with the situation Minnie!

She was asking for help finding the person on the forum who had it and discussed it. My link did just that. But thanks

[Reggie Dunlop]

I have had it for many years. I have significant fusion in my hips, lower back and neck area. I am currently on a biologic called Remicade, which I receive as a four-hour infusion every six weeks. Thankfully, my insurance covers the tab -- over $4,200 PER infusion.

The key is to stay active. I find swimming and cycling does not stress my spine. Also take care with diet -- some AS sufferers benefit from low-carb diets.

Good luck and feel free to message me if you have any questions.


Sent from my iPad using Tapatalk

[Jacks]

4 hour infusion?

Wow, I'm on the 1hr, I thought the max was 2hrs.

[Reggie Dunlop]

Originally Posted by Jacks

4 hour infusion?

Wow, I'm on the 1hr, I thought the max was 2hrs.

Mine is typically three. I included the prep and post-treatment observation time.

Not a fun experience. I typically go home and sleep for a few hours afterwards.

Luckily, the clinic (Coverdale in Mission) I go to is open on Saturdays. That's where I was this morning.

I also am treated with Remicade for Crohn's Disease. AS is common among Crohn's sufferers.

[meanmachine13]

I have it and am a 24 year old female. I was diagnosed approx 1 year ago. I don't know if I can help much but can give insight on the first portion of life with it haha. I have had symptoms for approx 6 years at varying degrees of severity.