Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Rhuemy app update. How it all went.

Went to my second rheumy app today and I must say I was impressed.

Well I manged to ask ruemy about all things on the list I had made.
Most he just nodded his head to and said yes thats to be expected with this disease. Others he wants me to have my GP send me for x-rays and see the ortho about. He also is booking me in for a endoscopy, you know the one that looks down into your stomache.
Got my colonoscopy results. All looked good. Did show I had Spirochetes but he said it was (he used a word I can't remember) something like incedental anyway he said it is nothing I need to worry about. He did say it is common in gay men of wich I am not obviously. Apparently it will be fine and doesn't need treating or anything.
Would like to know if anyone else has had this???

He asked again what meds I have tried not sure on spelling, celebrex, naproxsin, morbilus, fenac you name it I had tried it. None did much for me. SSZ I must say I told a little white lie about. I told him it made me sick when in fact I never tried it for fear of the side effects. (naughty me) But I didn't want to put them on the wrong side and not want to help me because wouldnt try it.

So they (yes 2 rheumies at one stage during the app) are referring me to a pain clinic at Major hospital in Brisbane (local 2 hospitals don't have this clinic)
There I will see 4 different specialists in one day. From memory they included a rheumy, ortho, gastro and I think neuro.
Once you see all 4 they have a little meeting and work out what they will do with you. (hopefully not take me out the back and shoot me like an old nag) LOL

It is very hard to get into this clinic so they are both writing referal letters and they are sending my GP a letter to ask him to also reffer me and then once all the referals are sent they want me to also ring the clinic. They are realy pushing for me so the wait time is less.

So nice to see they are trying so hard to help me.
However I couldnt help but think that their decision was a tad ageist (is that a word) It wasn't until they asked me how old I was and what I used to do for work that they seemed to want to push so hard for me. Oh well good for me I guess.

Oh he also said I need to keep an eye on my stenosis/lesthesis (sp) symptoms. These were shown in my last ct-scan and occasionaly my leg will go completely numb and not hold my weight. But its not for very long. I was told to ring 000 (emergency number here) If it is persistent and ask to be taken to the major Brisbane hospital for emergency treatment.

So thats about it at this stage. Have to see my GP on Saturday and get him to order the x-rays and what not.

So no treatment plan as yet but they are still working on it and at least they didn't turn me away and just say there is nothing more they can do for me.
All in all it was a very thorough appointment. And I am very happy with the dirrection things are going for now.

Trish
xxx

I hope it is the group at the PA hospital they are sending you to, I believe that it is headed up by Prof Brown who is part of the world wide gene id group specialising in AS. This is a section at the PA that only specialises in AS.

Good luck

Phil

No they are sending me to the RBH.
Think I am going to the PA for my ortho app. Bit of a wait though but will mention my AS when I go there who knows I might get to see the Prof that way. I will also ask my GP about maybe a referal to the AS department. If that is at all possible.

Thanks for posting.

Trish
xx

Trish I'm so glad you had a possitive appointment. Just having the right docs who want to help and understand you can make such a huge difference in a persons outlook on things. I think the pain clinic for you is great idea and having all your docs in one place can avoid confussion. They can conference right there which makes all the difference in you care. My docs are scattered from northern PA to southern PA to Maryland and no one wants to pick up the phone and talk to another.
I'm confident you will be recieving excellent care from here on out and I'm soooo happy for you. I'm impressed!!!!! A place that specilizes in AS???? Wow maybe the Orthopedics there will actually understand the desease.

Cindy

Hi Trish,
That appointment sounded like it went great. That is an interesting part about the little white lie, because it always seems like my doctors want to prescribe to me the medication I am most afraid of, after saying I'm sort of afraid of it, due to having complications with other but similar meds.



It sounds like you will be getting good care coming up soon. Wow, 4 specialists in one special referral! Good job!
Take care,
James

goooood for you to have a 'Team' of docs and not just one :] nice white lie.. ill remember that one.
do agree about 'age and former employment' i feel they do judge on this things and think its terribly unfair. we all have one life and it should be of quality no matter the age and no matter the occupation.
good luck and keep us posted.

I have to say that I am feeling pretty lucky right now.
If I could have but one wish it wouldn't be for me to be cured.
I know what you might be thinking that I am crazy but honestly after reading what everyone else has to do to be treated, my one wish would be that you could all access this pain clinic.
I just hope it turns out to be as impressive as my opinion of it is.

I know it's going to take some time before I get seen but I am so much more positive now just knowing there are docs on my side.

All the very best to you all.
Trish
xx