Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group went to the doc today

Hi Brad

I'm about ready to get out from under the covers ,I still got a couple of weeks to look into the Humira treatment before i go back to the doctor,It did hit me hard when the doc confimed that i have AS,But now i know what to look into and see what I need to do,I'll look into the NSD and LSD diets also,I hate to say this but when i saw LSD on here I thought how would taking a trip and never leaving the farm help I will get a plan put together in the next few days,Thanks for the support,all of you

Greg

Greg, the way I love my starchy foods, the thought of an taking a little LSD trip actually sounds preferable to cutting all that wonderful stuff out of my diet.

Brad

Hi Greg, I understand what you mean when you said that you knew something was wrong but feel devastated any way. I think it is just the shock of it, you know? I know you'll get good advice about humira here. Take care,
Jan

Hi Brad
since we are talking about the NSD diet,i just had a thought from years ago when i was working at the cotton mill,with the finished product,I asked a friend of mine (a Respiratory therapists) if breathing starch could hurt me,since i stood in front of a machine with starch flying everywhere,which he said he didn't think so,that is when i first started having hip and back pains,I worked in that department for 6 years or so and then went into the main part of the factory, and my back started really killing me then,seems like a loaded gun,now that i look back,I belive i will give the NSD diet a chance,but it will take a couple of weeks since i can't afford to throw out all the starchy food i got I'll have to do a lot of reading on the NSD,on anothere idea i got I'm thinking of starting a college sports discussion in the sporty KA section,do you think it would be ok ? since i wouldn't be talking from a doing it point of view, just watching,thanks for the post


Greg

Hi Jan

Yes it was a big shock,espically since i was told years ago that i didn't have AS by anothere Rheumy,I just didn't think about it anymore,The strange part was the new doc had called me before the appiontmnet and told me i had AS for sure,just hearing it from him just killed me,and from what little i've read about humira its scary,thanks for the post Jan


Greg

Hi Greg,
I also live in East Tennessee Im about an hour from Knoxville.

I thought I was the only one here in Tn. I have been having a very difficult time lately and haven't been online.

I am sorry you are having a hard time with your A.S. It also took me a long time to get a diagnosis. It sounds like your rheumy isn't trying to push you into anything thats good. Mine isn't very helpful but my family dr. has set me up with a rheumy at Vanderbuilt I just hate the thought of traveling that far.

I think you are finally on the right track. This is a great place to get any info. you need.

Good luck with the humara. I have been wanting to try the enbrel, my sister uses it and loves it, but my rheumy says that it isn't used to treat A.S. Shows what he knows hugh.

Best wishes,

Greg,

I completely relate both to your shock at getting the definitive AS diagnosis and then having to make a decision about starting an anti-TNF. My experience was pretty similar (dx'd on 7/31/08)--I knew something wasn't right but figured that the rheumy would just want to watch and see how my symptoms progressed. I was completely unprepared to hear that I had AS (though my case hasn't progressed to the extent yours has). She was trying to tell me about the anti-TNFs and I was thinking "I have to get out of this room NOW." When I left her office, it was my plan to take the Celebrex she prescribed and stay far away from drs. It took me a few months, and another serious flare (and talking to several family members who have serious cases of AS), to realize that I needed to be more proactive and needed to think seriously about the anti-TNFs. I did a lot of research, which did little to alleviate my concerns. I was terrified to make the conscious decision to expose myself to the risks these drugs involve. But, finally, I took the plunge. I had my first infusion of Remicade two weeks ago, will have my second today. I am already noticing signigicant improvements in both my energy and pain levels. I also know that this is my best chance to keep progression in check. I probably won't ever stop worrying about the long-term side effects, but at this point I am glad I made the decision to start Remicade.

My best wishes to you as you make this difficult decision for yourself. Monnica

Hi Pepper
where are you at ? takes me about a hour drive to get to Knoxville too,Let me know how your Doctor visit goes at Vanderbilt University,Thats a 5 hour drive from here,my sister tells there is a great rheumy in Kingsport,I can't remeber his name,could be Baum or Birbaum something like that,but i'm seeing one in Morristown because it is a lot closer to where i live at,I hope you are doing better with the AS,I've been lucky for a while with the pain,but the weather is changing,i would move to the desert to get away from the humidity,but don't know if i could stand all that dry heat LOL


Greg

Hi Monnica

I totally understand the "I have to get out of this room NOW." feeling,I was in shock when he told me they were doing X Rays to see if my middle back was locking up too,I will hear more about that when i go back and see him,I can't do the Celebrex and other antiInflammatories due to the heart valve replacement,I have to tell you this about the heart valve, i went to see the doc about somthing,no idea what it was for,but the nurse was checking my blood pressure,and kept looking at her wrist saying i'm not wearing my watch LOL it was my heart ticking away,and kids with good hearing ask me about it too I guess I'm going to try the Humira shots and see if they help,The long-term side effects scare the crap out of me from what i have read about it so far,I'm espically interested about your energy levels.Let me know how you are doing with that,Since i feel like a tired bump on a log all the time these days, I can't even have a cup of good,hot,black coffee,Sniff Sniff oh i can smell it,I'm going to cry LOL,I can smell the bacon and biscuits with it too,which i can't have either LOL i'm glad it is to far to go to the grocery store Thanks for the post Monnica,I'm more worried about coffee and breakfast right now than the AS,which is a good thing


Greg


ps just think Strawberry preserves and a omlett too,oh man