Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I am new to this site and to AS, and Im not coping

Welcome. I am glad someone told you about us. I am so sorry you are in so much pain. Your story sounds like so many of us. I hope you will come often to share and be shared with. I have so many wonderful friends that I would never have had a way to know without this forum.

I have an autoimmune overlap syndrome. My pain just about gets me. I don't tolerate the Biologics and am having to quit the steroids. We are just trying for some pain control and quality of life. Haven't gotten there yet. Morphine made me really sick last week...the immediate release. I take MSContin 30 mg. twice daily. I can handle that but I can't handle 15 mg. at a time.

Come back often. I am looking forward to getting better acquainted. I will be thinking of you and praying for your pain relief. That is something I do every day for my KickAS family.

Hugs and Blessings.
Possi

Well sounds like you've had it tough. your in my prayers and I'm glad you found this wonderful site it sure has helped me out. lots of nice people here and some very good information about AS its not any fun but it is sure easier to cope with good friends that you'll find here Good luck

Well sounds like you've had it tough. your in my prayers and I'm glad you found this wonderful site it sure has helped me out. lots of nice people here and some very good information about AS its not any fun but it is sure easier to cope with good friends that you'll find here Good luck

I went to just my optomotrist today to see if he would refer me to the opthalmologist. I have a stimatism in my eyes and wear glasses already and the pterygiums but I told hom about my AS and asked him about the pressure and pain in my upper eye and about the redness. The cortisone ointment has helped settle the redness but the pain is still present and it just feels swollen if that makes any sense.
Anyway the optomitrist didnt seem to care and said just to see how it goes with the ointment. I dont understand realy if you lovely people here say it is important and my doc said it was, then why was the optom so blarse? The hospital doctor the other night didnt even want to know about it. Yet you read on the AS info sites that you are to go to the EMD if you are experiencing these symptoms.

I am cinfused is it something to get seen to and take seriously or not?

Thanks again, sorry again also for all the questions.

can you just go to an ophthalmologist on your own without getting prior approval from another doctor? if so, that is what i would do. if it is iritis / uveitis, that can be serious. and there are more "aggressive" treatments that the ophthalmologist may choose to do. better safe than sorry when it comes to the eyes. it could be nothing new, but then again......

just because one doctor downplays something, doesn't mean they are correct. my GP has downplayed a lot of things that my specialists take very seriously. i'm lucky i don't need all the referrals that i used to.

No here you need a referal to go to the opthalmologist.
My doctor was worried, hense the cortisone ointment and asked me to go see the optom. The optom didnt even care that I had AS the only thing he was worried about was the ointment as glucoma (sp?) runs in my family and my dad has it.

I am so over fighting to be taken seriously. Have been doing it all my life.
Will press the optom again on Thursday when I take my daughter for her 2 yearly check.

can you get your GP to send you to an ophthalmologist instead of sending you to the optometrist, since he sounded concerned, sounds like he would work with you? in either case, i'd keep pressing the issue if the steroid creme isn't working. if it were working, then no, you wouldn't need anything else perhaps, but if it's not working, then obviously you need something else.

and i know saying to keep after it is easier said then done. i've had to really "fight" with a few doctors to have my needs met / to be taken seriously,
and i hate it! i so want to work as a team, so hate any confrontation. started taking my husband with me to important appointments and that has helped a lot, i am definitely taken more seriously. i still do most of the talking, but having another person in the room, the doctors are more careful how they treat me / what they say to me. a number of other people here have said taking someone else with them to appointments is helpful. maybe you are already doing that? just keep up the good "fight", now you have 7000 others to back you up.

Thanks again Sue. Will ask the doc to refer me. He seems realy good with all this.

On another note. I have had trouble getting an inittial app with a rheumatologist most I had to wait for 3 months min. But the last one I rang wants my doc to fax the referal through with all the problems I have and then he rates you based on this and gives you an app time based on how severe he rates you compared to other patients. If I explained that ok. So fingers crossed I get in soon.

that last part sounds familiar here as well, but even if you have to wait a little bit, at least you're moving in the right direction. i'd think inflammation of the eye might move you closer to the front of the line? fingers crossed for you!

Iritis/uveitis is generally diagnosed with a slit-lamp microscope. I'm not sure if all optomotrists have this, or could even diagnose it correctly... I went to my GP with my first iritis flare many years ago, she gave me drops for conjunctivitis even though I was certain it wasn't conjunctivitis as I'd had that before (and told her so!) - but the best thing she did was say that if it wasn't improving in 24hours, to go to the local hospital as they had an eye emergency unit there. Needless to say, that's what I did 24 hours later, it took a little while to get that flare under control but we got there.

It's good to know that the cortisone ointment is making it feel a bit better - steroid drops are normally prescribed for iritis flares, I've occasionally been given ointment for overnight in a severe flare. Yes, with your family history of glaucoma pressures are something they'll need to monitor - but for now, it's most important to get the inflammation under control rather than risk damaging the eye!

I know it's hard to keep fighting sometimes - I had to fight to get referred to a uveitis specialist, when this kept recurring for me - but you only have one pair of eyes, and unfortunately damage can occur quicker in the eyes than elsewhere in the body. I hope your doc can refer you to an ophthalmologist and you are able to see them soon.... please keep us posted!!

-Anke