Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Need Help

Hello to all,
I am new here on kickas.org, so please excuse my ignorance. Last week I was diagnosed with AS and do not know what to do. I am writing this in hopes of getting some direction. My doctor is no help. The doctor told me that I do not need to see a rheumatologist, and she will just take care of it. She is, basically, telling me it is not that big of a deal. I was told to take Ibuprofen 3 times a day and that is it. She told me nothing of the disease. I only know what I know because of my own research. She did recommend that I see a gastrologist. I am concerned about what is down the road. This has just started a few months ago, so I believe I am just in the beginning. My HLA-B27 is positive but I was told my pelvic screening was clean. I had only one x-ray in the front for my pelvis and none of my back.
I am a 35 year old male that was pretty active up until a few months ago. I am feeling horrible. I have fatigue, stiffness, soreness, and the list goes on. I have had a lot of stomach problems for the past two years but on and off since childhood. I have lost more than thirty pounds in the past two years. I almost have constant abdominal pain but, in addition, I am now fighting the back pain, SI pain, hip pain, etc. (AS stuff). I found AS when a friend of mine told me to go on a starch free diet. It helps only a little bit. I need help because I do not know where to start or what to do. Can I please get some help? Thank you in advance.

Hi Key ,

Welcome to the A/S group, you will learn all you need to know about A/S. I would first, insist on a rheumy . The rheumy may not give you anything else , for the inflammation, but he will also tell you about the other treatments if the anti-inflammatories don't help. I don't think a G>P can even order Biologics, which is available to you if you have insurnace . Where are you loacted ?

Janet

I'm not sure what country you are in, but you definitely do need to see a rheumatologist, so don't let your GP fob you off on that. They may initially just prescribe NSAIDs regularly, but you do want to have regular monitoring, because there are other treatments that could be used (including biologics) if your inflammation is not well controlled by NSAIDs alone.

The other thing is that really a rheumatologist is the only one who can diagnose this condition, as it has to fit rather strict criteria. It may be that at this point you wouldn't have a diagnosis of AS anyway, but rather a more general spondyloarthropathy diagnosis, if you don't have the definite signs of damage on sacroiliac xray or MRI. The diagnostic criteria for AS are quite specific and it can take years for the signs to show on MRI. That doesn't mean that treatment is any less important, and in fact thats another really good reason to see a rheumatologist early - so you can get aggressive treatment early in the piece and hopefully avoid or slow down progression.

If you have gut problems, then definitely see a gastroenterologist - the two things do go hand in hand (inflammatory bowel disease and spondyloarthritis) - but don't let that stop you from also seeing a rheumatologist.

Thanks for the help, so far. I will look into finding a rheumy. One of the problems I do have is my location. I live in a small midwestern town in southern Illinois.

Hi Key,

Welcome! I am sorry for your situation. I echo the previous posts that you really do need to see a rheumatologist. Even if you have to travel a ways to get a diagnosis and started on a treatment, it will be worth it. You won't have to go very often.

I hope you get some relief.

Possi

Welcome and sorry about the Bad genes.
You are in good company.
As everyone else has said.. seek out a good Rhumy in your area even if its a drive. there are way better options than 3 ibuprofens a day for pain. Biologics are amazing and way better on stomach

Hi Key,
Boy do I understand you're confusion. I was dx'd back when they knew nothing about it. So glad you took the initiative to do the research yourself and welcome, welcome, welcome. You will find a lot of info here and the nicest people ever. We will help you get through this huge learning curve.

I live out in the boons too and have to drive 1 1/2-2 hours to get to most of my appt.s. You will absolutely need a Rheumatologist just to start off with. Look at the no starch diet section here. It will help tweek the NSD that you are already on. If you can't tolerate the pain, find a Pain clinic and they will start you on something to alleviate some of your pain. I would have horrible gut pains too if I took that kind of Ibuprofen. One pill and my stomach bleed's. Who dx'd your A.S. Was it this Dr? Did she send you to a Rheumy? Go back to that person and he will start you on something else I'm sure. You will need a G.I. Dr. to help you heal your gut. Poor guy.

Don't be worried about what is to come. Just take it in baby steps right now. Learn everything you can but they have so much now Key to slow down the progression so you don't have to get as bad as some of us oldtimer's who used to have hardly anything.

Get that stomach back into some good health and find a Rheumy first and foremost. There are other things later to take for that awful heavy fatigue. You can regain some of what was lost. Hang in there and don't get overwhelmed and come to the board often and ask away.

Welcome, Key:

Any competent physician can diagnose AS, but very few can treat it properly; that part is mostly up to us.

To do the NSD properly, please check in to the NSD Forum and have Your diet analyzed by the best--those of us with actual experience. There, I would be more inclined to providing You with some things that will help more than diet alone. It does not take much. But, depending upon where You are located, the Edgar Cayce Three Day Apple Diet might help very much and provide a leg-up allowing the NSD to work more effectively.

Glad to have You here, HEALTH,
John

First, go back to your incompetent doctor again. Scold her and tell her she knows nothing of this disease. Second, find yourself a proper rheumatologist. If you get banned from your first doc's practice, no biggie. Honestly you're better off, because she's awful.

This disease is most definitely "a big deal". But now it's time to really dig in and fight. Arm yourself with knowledge and be prepared to try traditional and non-traditional medicine. It's unfortunate, but doctors are not the most reliable people in the world. Never put all of your faith behind one doctor. Stay skeptical. There's no law out there that says you have to agree with your doctor.

Also check with your local Arthritis Society, they may offer support in ways you may not think of, including providing recommended stretches and posture reminders, these are important no... VITAL stretch everyday every joint you want to keep mobile! if you dont use its full range of motion every day you may loose it. And getting on Biologics can help slow the progress down.
this is a link to my stretch routine. Do not go beyond pain to stretch. but do stretch what you can as often as you can. i use these videos to remind me to stretch every joint. http://www.youtube.com/playlist?list=PLi6zcbSiBToACjhmHOHZVZgyQX3ZOifBa