Spondyloarthritis / Spondylitis Forums - Spondylitis Association of America
Spondylitis Association of America Home Page Learn About Spondyloarthritis / Ankylosing Spondylitis About Us - Our Work More Ways To Connect With Others / Support Groups And More Become a Member of SAA We Are A Nonprofit - Donate Today Shop for Products
Topic Options
#278598 - 07/18/17 02:31 PM Newly Diagnosed with AS, questions on activities?
pcschult Offline
Registered Visitor

Registered: 07/17/17
Posts: 2
First, I would like to say this is a fantastic community. I have read through many posts and comments and have seen nothing but compassionate and helpful people. Keep it up everyone!

I just wanted to share that I have recently been diagnosed with AS, it took many months of scans, tests and blood draws to understand what I had going on. My doctor thinks with 90% certainty that its AS which is afflicting me. My AS is different than many of the people on here as mine isn't nearly as debilitating as some of the stories I have read. Perhaps that is just because my AS hasn't progressed to that point and it will eventually get that bad? I am a 29/M and last year around September time I had been experiencing a dull, ache in my thoracic spine region. I chalked it up to being a part-time bartender, but I noticed it wasn't going away with rest. So after many rounds of PT and Chiro, my doctor decided to run some blood tests. First off, I was HLA B27 positive, had slightly elevated CRP levels (6.7) but normal ESR (7.7) I did also have an increased WBC with slightly elevated Lymphocyte counts. Which from my understanding indicates inflammation in the body. Has anyone had similar experiences? Given those blood tests, the doctor wanted to run an MRI on my Thoracic Spine and Sacral Joints, both of which came back from the Radiologist as 'unremarkable'. So it doesn't sound like there has been any fusing, yet.

For now, I have been able to get by just taking Aleve or Tylenol. As I said before, this has not been nearly as debilitating as others on here have experienced. This may be a stupid question, but are there AS sufferers that don't experience the severe parts of AS?
With all of that being said, the main question that brings me here is regarding golf. Golf is without a doubt my most favorite activity to do. If I am not working, I'm golfing. My biggest fear is that AS might put an end to that for me. Just thinking about not being able to play golf makes me incredibly sad. Are there any other AS sufferers out there that continue to golf? I would very much like to hear your stories and how you cope! Thank you again for all of your help everyone!

Top
#278737 - 08/10/17 01:23 PM Re: Newly Diagnosed with AS, questions on activities? [Re: pcschult]
Ericsmom Offline
Registered Visitor

Registered: 10/28/07
Posts: 235
Loc: Ventura County, CA
Sorry for your diagnosis. I'm glad your symptoms are fairly mild at this point.

I have a now 21 year old son who was diagnosed at age 11. While not a golfer, he is an avid soccer player. His initial symptoms were severe enough that he did have trouble playing soccer for a while. He was so sad at the thought of not being able to play soccer again and I remember it being so hard to comfort him knowing that he might be right. Fortunately, he was started on biologic drugs-first Enbrel and then eventually Humira- and he has continued to be extremely active. He even ran cross-country in high school. He is now playing D2 college soccer, so has been able to compete at a fairly high level. I will say that it has not always been an easy road. He does have occasional flare-ups that make it tough to stay active. His AS has affected his performance in that if he comes off to sit on the bench for a while, he gets very stiff and has a hard time going back in. He has to stay moving while he is out of the game. I think he has lost some of his "quickness" with his AS. I do have to say that I think it is an advantage for AS people if you are a naturally active person to begin with. Exercising and staying limber are key to keeping symptoms in check. I know that in my son's case, he works out regularly and does yoga- partly for the benefit to his soccer, but also because he knows how much it helps him. I know golf involves a lot of twisting action so may be hard on your back with the AS element thrown in. Everyone reacts differently to their AS and to the various treatments. It is hard to say if you will be able to continue to play golf long term, but if your AS does advance, their are a zillion treatments plans that you have not tried yet- there is a good chance that some of it will help you. Best of luck!

Top
#279037 - 09/16/17 05:46 PM Re: Newly Diagnosed with AS, questions on activities? [Re: pcschult]
WeatherGeek Offline
Registered Visitor

Registered: 08/02/17
Posts: 2
Loc: Binghamton, NY
Hello:
I think the fact that it is caught early is a blessing with regard to being able to control it before it does so much damage. I have suffered the debilitating symptoms since I was a kid but had gotten so bad by the time I was properly diagnosed in 2008 (at age 46) so much damage had already been done and there are just things I cannot do because I do have have the range of motion due to fusion. I was diagnosed with just about everything under the sun and I am pretty sure I have built many vacations homes for chiropractors over the years etc. I have learned to live with it. However, from what I know at this point, if you catch it early, take the meds that keep it from progressing and take care of your health in general, you are not so likely to suffer with it as I have since it will not have the opportunity to progress unchecked.

Top
#279038 - 09/16/17 06:53 PM Re: Newly Diagnosed with AS, questions on activities? [Re: Ericsmom]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1319
Loc: Whidbey Island WA
Such courage. You must be very proud.
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

Top


Moderator:  ElinAslanyan