Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group ~Update~ Had Rheumy appt.

Hi, I hope a few remember my post from the other day. I went up to see the new doc today. She says she wouldnt say that I definately had any form of spondylitis, and at this point mt symptoms sound more like degenerative arthrits than infammatory. She says she based that opinion on the fact that nothing was "inflammed" today.

I guess she didnt take into effect that I am HLA + and my dad claims to have AS? I think I left there more confused than before I got there. She did say she wants to me see an eye doc as soon as possible for an eye exam. She also wants me to continue with the Aleve and start taking Gluclosamine and Fish oil caps. She also said to come in when i have my next knee flare.

I just wish I could get some concrete answers! I am in constant pain and I am afraid it is going to be a lifelong thing :(

What do you all think?? I was afraid that maybe I was jumping the gun abit. Then I thought that by the way she talked to me that she thinks I may indeed have somethink like this, but is reluctant to say that??

Thanks for all your help so far!! :o)

Sounds pretty typical of what most Rheummy's say with a new patient. Grrr, huh?
Did she mention anything about getting x-rays or CT scan of your SI joints to check for fusing? Have you had any other blood tests to look for RA, sclerderma, ect??

Don't give up, ok? We've all gone through this atleast once... sometimes several times.
They (doctors) can make you feel silly, uneducated, and crazy. Don't let them do that to you. You're at the right place here at KA. You've got the best people behing you, and LOADS of knowledge!!

I would ask the doc about the x-rays. Sounds like she's doing alot of guessing... tell her that you want answers, not guess work. Hell, you can do that yourself without a fee!!

Best of luck!!

Stacie

Doctors, unable to diagnose AS will surely make it worse if they are allowed to treat it; boot the NSAIDs. If the NSD works for you, you have AS...and then you don't!

Good luck,
John




"Ah but if somehow you could pack up your sorrows, and give them all to me--
You would lose them, but I know how to use them; give them all to me""
Pack Up Your Sorrows Richard Fariña and Pauline Marden

Hi,

It's not a quick process unfortuneatley, took me 20 odd years, allsorts of episodes.

The Dr's work to a protocol etc so staying with one is important 3 months of aches and pains blah blah......the fish oil may well help as it is a natural anti-inflammatory and not as nasty on your system as nsaids.

The eye Dr is important as it is a window into the underlying problem they can judge the cell types affected that might well implicate more systemic problems.

One of the issues you can have is that things flare at night and if you are n't very active and quickly disappear it's only when the disease really gets going that it's more perisistent.

Start keeping a diary for your next appointment, next time it inflames bad take a picture.Date it! They get the message, (I'm learning on that one!) evil laugh.......

David

Hi I know it is a very frustrating road you are on right now. But rest assured that almost everyone here took a while to be dxed. Mine started at 19 after an accident in the military but wasn't found until I was 30. It is quite a rollercoast ride your on right now and I hope it doesn't take much longer to come to a halt. Keep fighting the good fight.

Rick

I know exactly what you mean. I am also HLA-B27 positive, but was told I do not have AS or any other disease. My rhuemy thinks that B27 tissue type causes a predisposition to tendonitis, and that why my entire body hurts. I'm going for a second opinion at the NY Hospital for Joint Health. Anyway, my wrist is pretty bad right now, so I'll make it short. Check out "I might have AS..." and "New and Not diagnosed." They are both posted on page 6 (right now) on 04-04-04. You are not alone! Good Luck!

Liz

Hi Jamie!

It wouldn't surprise me if your doc is just holding back on making a definitive diagnosis out of some caution to double check things first. Often, despite certain indicators, they want to see if you respond to anti-inflams first, so I wouldn't give up on this doc just yet.

I do think it's odd that the doc doesn't consider your constant back pain could very well be due to an inflamatory process. Did she say if she was basing that opinion on bloodwork results? Since AS is sero-negative the indicators in bloodwork are not as reliable as they can be in other types of arthritis, so for some it can cloud the obvious somewhat.

I certainly hope you'll find these answers soon and not be given the run around. In the meantime please stick around, as you will find so many warm people here who can relate to your search for answers. Plus it is just such an invaluable resource for info!

Take care,

mig