Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group First Rheumy Visit

Well after a 2.5 month wait I finally had my first Rheumy visit. After reading about the troubles a lot of folks had on here I was not sure if this would be a good visit. Well besides him comfirming I have AS it was a good visit. All told he spent like 40 mins one on one time with me and the truth is I like him...He is definetely old school but his basic opinion was yes you have AS and based on all I see and took in from your history this is a normal but mild case. He said he had over 200 AS patients that he has been treating and tracking over the years. He said most of his cases were like mine and that at most he thought my SI's might fuse but that everything else looked good and my ROM's for all my joints is very good. It was weird going thru all the ROM's with him as he is a little guy and I towered over him and I am not that tall. It's hard not to like someone when he give you news like that. I know there are no guarantee's but he did give me a lot of the same advise a lot of folks on here have mentioned and given. We do disagree on a couple of points tho....since he recognized that I am into bodybuilding he did say he did not want me weightlifting...when I balked, he clarified his position that body weight work and reasonable weights were fine but not heavy lifting workouts...I am ok with that..I mentioned that I did want to be very aggressive in making sure no more damage occurs and wanted to explore TNF's...he said that he thought it would be hard for me to get approved for them thru my insurance as my history and symptoms don't warrant it...he did write me a script for an anti imflammatory Relafen and told me to use them for a month and see how I feel....He sent out labs for SED and CRP and he said if they were elevated he might be able to make a case for TNF's. He did not think they would come back very high...He seemed pretty confident that I would not have very much fusion and of course I would like to believe that but since this is my body and my life I am going to give myself every advantage...I probably won't use very much of the Relafen and will move to LSD and see if that helps. He seemed to be of the impression that since I have had this for awhile and did not have much damage that my future with this was very bright....I want to believe that but will keep a close eye on myself going fwd. When I see him in a month I will bring up the starch factor and see where he stands. I guess this was long winded and what I am saying is I liked him and am cautiously optimistic

Chris

Chris,

Sounds like you found a good doctor on your first try which is very uncommon for us here. I noticed you said he was old school and reviewed your medical history prior to telling you what was going on which is key when making a diagnosis.

As a previous bodybuilder, runner and martial artist I agree with the doctor on cutting back with the weights. You may not feel it now but as you age you will feel it years from now. I'm not saying you need to stop but to pay attention to the amount of weight and stress you put your body through. Adjusting now can save you a lot of suffering in the future.

Brent

Thanks Brent...I agree with him too....I however am still dumb enough to do stupid things even after my initial diagnosis that I should not...I should not have dug out 650 sq feet of my front lawn, replaced it with sod and then unloaded all the dirt at the dump by myself...I should not have carried our new couch up the stairs on this past Saturday and then have the two people on the other end lose their grip and basically drop it on my back...Funny thing is, I am fine with the lighter weights but, it is the stupid things like the one's I just mentioned that I need to slow down on but never seem to....it's just hard as I have always been really strong and always helped everyone move and handle the heavy lifting...I know that it is all ego for me to keep doing these things especially when I have AS....Dang testosterone..

Chris

Hi Chris, I am happy you found such a wise sounding doc and not nearly as surprised as some here might be... I've been fortunate to meet some outstanding Rheumatologists over my years with AS... and I've always been under the care of doctors that I admire, respect and trust. And wow, 200 AS patients is considerable for any one doc!

I'm glad your prognosis is looking quite positive and admire the proactive attitude you've adopted, it should serve you well.

Since AS is a bone thieving disease, weight bearing exercise will help you maintain bone density. Pushing yourself too hard can make matters worse, in my opinion, but am sure like we all have, you will learn to listen to your body and figure out your own comfort zone. Keep fighting!

I still, occasionally, do dumb things knowing full well they are, too. lol

Cheers!
mig

Chris,

I can understand you doing the heavy work even after being told not to do so by the doctor. I was the same way for 16 to 17 years before I figured out I could not do moe of what I wanted to without setting off other problems with my body and this disease. While I gave up the physical stuff a lot sooner it took me four years after my diagnosis to give up martial arts. Most likely if I had it all to do over again I probably would end up doing the same things all over ending up in the same shae I am now, but it does not hurt to be cautioned to make you think a bit.

Brent

Chris, I'm very glad you clicked with this rheumy from the first. It can be difficult to find a doctor you trust. Like Mig, I have been blessed to have some great people on my team, so I know there are many good docs out there.

When I get to the gym on a regular basis, I do weight training. Low weight, high reps. Now, my version of 'low weight' is probably very different from yours, but if you keep it to body toning, rather than body building, you should be OK. You might also look into the eliptical (sp??), which can get you the aerobic exercise we need without the high impact of using a treadmill or jogging on pavement.

What I really liked about what you told us is that your rheumy advised you to try the Relafen for at least a month to see how it works for you. My first rheumy holds to the same phylosophy. Trying something (any treatment) for just a few days is not long enough to see if it's truly effective. After a month, you should see results with most treatments. That said, NSD/LSD and the biologics can sometimes take longer depending on the patient.

As for the biologics, did your rheumy get you to do a BASDAI questionaire? Here's a link to an article about the BASDAI index. Apparently, I'm considered to have a 'mild' case (mild is so relative), but my answers on the BASDAI indicated that AS has had a severe impact on my life and that is why I was recommended for one.

Hugs,

Hey Kat...it's funny you mentioned the index..I was ready to reply that no he did not but I deceided to look and see what questions were on the test and in fact he did ask all those questions just not formally. He actually took an extensive history and a lot of notes which really impressed me....I work for a large hospital and have been in healthcare for a long while now and I deal with doc's all the time and altho they are impressive in some aspects I look at how well a doc listens, takes notes and responds to the actual issue/question at hand. He ranks really high for me. I took the test online and scored a 1.6. I am not really in pain right now but I will take the relafen for the whole month til my next appt when I will get my blood results. I did not notice anything the first two doses so we will see how this goes. I really want to chat with him about LSD but he seemed to think for me exercise was going to be the key. I do use the eliptical from time to time but for the past year I have trained mostly with Kettlebells hence my SN. They are pretty high intensity and pretty high impact but I think I know better now and will discontinue my use of them and move towards a lower impact workout. I do love to swim and have been for some time now so I will definetely keep that up.

Chris

Chris,

Glad you could find such a good one so early. They are definetly hard to come by. I've fired one so far as he liked to laugh at me and downplay the level of my pain. I've got a new one now and she's been real good so far. I hope all works out well for you.

Glenn