Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Please help? Just Diagnosed this week.. So lost..

HI everyone! My name is Chris 24 male from Cali and was just diagnosed with AS 2 days ago! Iam so lost and confused so just hoping you all can help me out here Thanks you so much! I appreciate you taking the time out to awsner and share with me what it has caused you. to give you a little history with what happen to me here it is......

It Started in my right ankle one morning as I woke up I had sever pain. I went to work that day and it got worse as the day went on. Later that night the pain got so worse I went to the ER and they took x-rays of my ankle and said it was negative for any breaks and
that it was GOUT. So the ER doctor gave me Colchecine. The next take I went to a FOOT specialist and he said I had a fracture and to come back in 2 weeks and gave me vicodine and celebrex for the sweeling. He also sent me in for an MRI to my right ankle and game back negative for breaks fractures but showed I had swollen tendons and ligaments possiblye for an tear years prior. Well I went back to him
2 weeks later and it had spread to my left foot/ankle area more around the toes. So he sent me in for blood work. Also at that time I went to another Doctor and he said it was GOUT and gave me a cordazone shot in my ankle. Well 1 week later still nothing happen and then I got my results back on my Blood and the Doctor said I had a C-Reactive protien count of 63.2 and normal was .2 - 4.2 so he imediatly said I had to go to a RHUMATOLIGIST so I got in 2 days later and by that time it had spread to my left knee and now my
right ankle is swollen with no pain, left foot swollen with lots of pain and left knee is swollen with pain. So he sent me in for a test HBLA-27 or somthing like that and some other blood work and just yesterday I had a 101 temp so I called him and he precribed me some antibotics frearing I have an infection while taking the steroids he has me on, so over the phone he said that the HBLA-27 came back and he thinks its AS.... Which makes no sense to me because I have absolutly no pain to my back, hips, or neck ever and still dont.. So I dont know what to think?? But I am going for a second oppinion FEB 2nd in 2 weeks at UCLA so Im not sure what to do? Im 24 years old and in shape and just dont know what to think of all of this? Im scared that I wont be able to walk again run and do all the things I wanna do in life... The meds Iam on right now are CELEBREX 200mg, MEDROL 4mg, but stop taking MEDROL and now take PREDNISONE 10mg.... those are the only 2 meds I take for now..

So Im just curious are you able to funtion and be normal and run walk fine and just be a normal person?? I went to my Rhumetologists to day and he gave me the diagnoses in person instead of over the phone and said that its kind of good I got it now because 20-10-5 even a year ago their wernt really any meds to treat it but only to take the symptoms away. He said Embrel and Remicade were just FDA aproved not to long ago with 6 years research behind it and says it works wonders on people. He said that it will actually stop the desease from progressing and stop the flare ups, Yeah it sucks to take a shot once a week but if it takes the pain, stiffness and swelling away and mostly stops it from pregressing to my back and neck that is awsome! I have been like this since 11/28 just over 1 month and a 1/2 and glad I got a diagnosis so fast I guess some people can go years and years not knowing and it gets worse. So basicaly what Im scared of the most is not being able to walk and be normal anmd run! I was suppose to go to a CHP academy march 6th but that all got put on hold because of this! Somthing I worked so hard for now I cant do! The doc said he has a few guys that are officers that come in and have what I have and worse but I dont know how it will affect me seeing how I will have to go through essentially a 6 month boot camp style academy. Its like the marine core but worse and longer! So Im just scared that I will have a flare up and not be able to to the physical training which mostly consists of running, sit ups, push ups, judo pusch ups, pull ups and so on. Some people say that the working out will be good for me cause it keeps me moving and going but I dont know it it will enflame me because I will be working it out extra hard! Im sure once Iget through the academy I will be able to do the job just fine! what do you think? do you know people who are fine and can return to daily actrivities? its crazy man!!! here I thought I was on top of the world and BAM!!! I wake up and my life is literly changed! its crazy! Also do u think eating th right foods will help? like no soda, aclchohol or any fastfood and just good stuff, I always thought that if you eat healthy! work out excersis and do all the good things to your body it has no reason to act anything but healthy.... thanks for everything and talking with me about this man! Its great to know people can be their for times like this who know what we are going through!


aslo just one last thing I here that ENBREL does wonders along with REMICADE? I will be starting the Enbrel next week so hopefully I will have a good experience and my body excepts it.

Hi Chris, I'm glad you found us-welcome to this site. I'm sorry you've been diagnosed with AS. You will spend the next several weeks online learning everything you can about this disease. It sounds like you have a very proactive doctor. It is good you've been diagnosed so quickly. I think your prospects for a fulfilling life are excellent, but there may be some adjustments.

No doubt you've checked out the diet forums on this site, but if you haven't, do. A lot of folk find the diet helpful. The main culprit from the diet perspective for AS are starches.

AS doesn't always present in the typical SI joint area. The heels and ankle areas and neck area are the other 2 main target locations. Hopefully the Enbrel will prevent damage from occurring (you get either Enbrel or Remicade-not both at the same time-if the one doesn't work out, then they may try the other). Some of us are well advanced in the disease process. While I have damage evidenced on my x-rays, I have suffered with some degree of backpain for 23 years, for me, a whiplash, then on and on from there. The chronic pain caused me to suffer with sciatic pain for many years (the last 13 years), but I mostly sucked it up-a lot of women do, and got on with life in spite of it. I developed iritis in my left eye, which I absolutely could not ignore, and that got me to the point of my Dx of AS.

Your main concern appears to be a change to your future abilities. The fact that you are so physically fit is definitely in your favour. Exercise really helped me improve my pain levels. As far as running, we have several members who love to run, and our member called Orch likes to run marathons.

Hugs...

HI can welcome to Kickas,

Sorry to hear about the pain and the diganosis, but I think it would be a good idea for a 2nd opinion.

Some of the diagnosis tools they use...

- HLA B27 positive
- Elevated ESR or CRP
- Family history
- Stiffness (particularily in low back for men) that improves with movement, so mornings the worst
- X-ray that shows damage

Enbrel and remicade both seem to be the new front in battling AS from a med standpoint. But there are alternatives as well if you choose to explore such as diet. I changed my diet 4 yrs ago and it has made all the difference.

Best wishes to you in battling the pain and at the academy.

Tim

Hey there

Go get your second opinion, then come back to see us. Let us know either way.

I dont have AS, buy my son Eric does. Eric was diagnosed when he was 9 and is now 15.

If your second opinion comes back that you have AS, Eric has been on Enbrel and Remicade. I will talk to you about Erics story and how much his life has improved.

There is also a forum here called the no starct diet. You were asking about food. Go there...poke around and see what you think. Cant hurt to try...

Try not to stress over it. Stress will not change the outcome, but it can and will affect you if it is AS.

Good luck, and I hope to see you back here telling us that it is something other than AS.

Lori

Hi Chris,... and Welcome to KA!

I remember having the same sorts of thoughts and fears for my future that you're going through now. It took me quite a long while to wrap my mind around the idea of being stuck with a chronic illness.

I also had a very sudden onset; at 18 y/o - BAM - one day I just couldn't walk for the bad pain in my hip. I think (?) sudden onset is more common in Reactive Arthritis (ReA) although mine is classic AS. I agree that a 2nd opinion might be worthwhile since your's doesn't sound like the most typical onset.

Most folks would think I look 'normal' despite living 25 yrs with fairly aggressive AS. Now a days I can walk, and could even jog a short ways but don't. It's not what I consider a safe activity with the degree of damage that's been done to my spine over the years. Your chances to avoid any damage are excellent and entirely different from what I faced. I've been on Remicade for just over 1 year now and the difference is remarkable; unbelievable really!! So I wouldn't give up on any of your dreams just yet; you have many reasons to be hopeful.

Another positive thought is that my brother who was also dx'ed with AS (had heart troubles, massive swollen knee, plus iritis) had his go into a lasting remission. Although remission seems to be rare, it can happen!

Best of luck if you try Enbrel, and let us know how it goes.
mig

WOW!!! Well Im doing all the right things now! Im not eating any fastfood, drinking, soda's, and working out, since I have had this a month and half ago, Just eating frutis veggies and less bread and fish and so on.. I just hope that I will still be able to do the CHP academy! My greatest concern is that I will take the meds 2-3-4 mo into the academy I will have a flare up in my knee or ankle! How long do u go with out having flareups? if your on Enbrel and Remicade? Will I be able to get on the meds now since I caught it early and in JUNE be able to go 6 mo with out a flare up to my knee or ankles? what do you honestly think? thank you sooo much!!!

Hi Chris and welcome

I would definately suggest trying the No Starch Diet (NSD). Within 9 months on this diet my husband Jon was off all meds and has remained that way since March 2005.

If you go back to the main homepage www.kickas.org you can read about the NSD in the Diet Center. It explains the theory behind how the diet works. When I first read about it, it really made sense to me - sounded completely logical.

Also here's some recent No/Low Starch Success Stories

Also, check out the NSD and diet related forum.

Take care
Chelsea

I start the Enbrel this week, so any advice would be great to here now. The most pain I have are in both my feet and ankles, and my left knee has trippled in size due to swelling very painfull and can not move it. Thats why my Doc is not waiting for the 2nd opinion and neither am I because it is getting worse and worse. But I still do have my apt. at UCLA on feb 2nd and will still be going to that doctor and maybe another one at cedar cyinide. How long has your son been on it? and also is he able to do everything normal run, jump play sports and all? how often are the flare ups? My worst case is that I will get a flare up while at the academy? Im just scare of my ankle or or knee swelling again later in life....

Hi TIM!! Thank you so much!! I have read a few of your posts and they sound very up lifting and offer alot of hope to me =) Befor this all happen I was eating very very bad food.. I was literly eating fast food 3 times a day and drinking on the weekends so i dont know if this is what triggered AS but since this happen a month and half ago 11/29 be exsact I havnt eating ANY type of fastfood, no alchohol, and Iam not down to about 1-2 sodas a week! I eat nothing but fruit, eggs, turkey sandwiches, and greens now. I just found out about the whole starch thing and their is alot of food with starch so its so confusing I know breads, pasta, beans, rice are major sorces of it so Im having to cut that all out also. I start the ENBREL this week because my Doc says its not wise to wait and neither do I!!! I seem to get worse day by day, My left knee is literly 3 times the size it usually is! so alof of pain, also in both my ankles and feet. I am taking prednisone 10mg right now and celebrex 200mg, along with vit c- and centrum. My liver was elevated like you said! it was at 179 the first week and then 2 weeks later it droped to 150. So I guess it is on its way down! The doc said it was prob all the Vicodine and drinking I was doing befor hand, I went through about 30+ pills in 3 weeks when the fist onset in my ankle of pain... but iam off the pain and now take nothing for pain.. So what do you usually eat like foods that are constanly in your diet and also have you tried the Enbrel remicade in the past? and has your liver gone back down to normal? what was the highest number you were at? mine was the 179...

I start the Enbrel this week... So hopefully it will start to work and I react very good to it! Both my feet and ankles are swollen and my left knee is literly 3 times the normal size and lots of pain... Are you on the ENBREL?? and if so how long and how long do people go with out having flare ups? My fear is I am going good then like 2-3-4 months into the academy I have a flare up thats what Iam affraid of? do you know people that go a year or more or so with no flare ups?? =)