Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group How mny people with as actually fuse?

THey keep me busy..... but mainly they keep me being very very silly. NOt many things in the world better to be than silly with a purpose.

 
stevec-they also serve who stand and wait

it is splitting hairs, but most docs can not and will not say you have ankylosis when you do not have any sign of bone fusion that is what it means.
That is why so many people can not understand why they are only told they have fibromylegia or a spondylitis.
As I have always said, this is a weird disease, the accurate name is only for when you have fused not the disease leading up to it which can take years.
That is why markers like hlaB27 are so important, they can then say you are probably likely to go on to AS so we had better start some therapy.
I know that it sounds pretty crappy but it is a crappy disease and with Lawyers hiding behind each door (no disrespect to Stevec) docs are running scared of litigation and this shows up when you apply for disability, how do you explain to a government laky, yea I have AS, but it wont show on the xray for another ten years, oh right.
If you have time check the lupus site www.lupusuk.com, you will see they have the same symptons and the same problems at diagnosis, they also have spondy, fibro and RA but you have more chance of dying because of this disease than AS and we with lupus also have to see a rheumy, this is where accurate diagnosis and description is critical. I have both only because males are hard to put into the picture with sle, so I have dle and AS which fits into their neat little boxes.
Sorry to ramble but any body can pm me if they wish to clarify any points.
rat

Yes indeed Steve, you are an excellent year.

George

Brent, the Surgeons can do better now than they did with me over 20 years ago.

George

Re the heart attack Brent, were you diagnosed as having any heart valve problems prior to the heart attack? Just curious as one of the strange things they found when they did an angiogram on me was that I had calcification layers showing up on my Mitral valves.

I had always believed that AS just went after our bones.

George

Took my SI joints about 10 years to fuse completly. About the same for S1 and S2 to fuse. So far those are the only joints that have. I'm 43.

http://www.geocities.com/ken_delano/

I hope that the fusing goes no further than that for you. Fight it as much as you can to maintain your flexability. I didn't do a good job in this respect and I accept the blame for ending up with so much bending.

My fusing just seemed to happen so quickly and by the time I realized that I had to take some kind of control over what was happening, I was only able to stare at the ground rather than straight ahead.

George

I am 100% fused. It took about 20 years to get this way with my neck being the last to totally fuse but that was because I was in a coma for a few months with no movement. Pretty weird going to sleep being able turn your head and waking up with zero movement.

The worst part of being fused like I am is when sitting down to eat things such as soup, I can never get a full spoon into my mouth. It all runs out the other side of the spoon before I can get it in my mouth. LOL The same goes for corn or peas LOL

Life is still good however!!

Bob



Got an itch? Scratch it!! Scratchboard Art by R. Berendt