Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Rheumy appointment frustration

Well, today I had my rheumy appointment to find out if ASed AS is indeed what I have been suffering from, and according to the dr. it is not. She said that my x-rays show no signs of damage other than some mild disc degeneration, and my SI joint scan and full body scan show inflammation levels of 1.01 well within the normal ranges, so she said that this isn't AS. She said that if I want we could do an MRI but that it probably wouldn't show any more than the bone scans did.

I don't understand how I can have this constant pain and to have many days where I can hardly function and yet there is nothing wrong. She told me to stay on the meloxicam and pariet and to go to physio for 3 months and if I still have pain to come back. She is thinking that it is just a muscular problem. I am really feeling like maybe I am just a wimp and that maybe I should just suck it up and deal with it. Maybe I should just be thankful that I don't have AS.

Thank you all for the kindness and support here.
Jill

Jill, Jill! You are not a whimp. I hear the same thing. Many of us undiagnosed people know exactly what you mean. You may have to educate him or go to a new doctor. Five years ago I finished playing the last quarter of a town team basketball game with three broken fingers and two bones in my hand. But I have had AS pain just as bad and an X ray show nothing beyond normal..arthritis
Keep strong dear. Love yourself and do not give up.

Thank you for your post Lon. You give me hope. What were/are your symtoms? Are you B27 +? Last question, what are you doing to manage your pain?

I have booked an appointment with a kinesiologist to work on my core muscles to see if that will help me out with the pain. My Rheumy said to try that for 3 months if I still am having a lot of pain then she will send me for an MRI. Have you had that done? If yes, then did it show anything?

Thanks for taking the time to give me some much needed support.
Jill

Jill,

Hi and welcome!

I am HLA B27+ have most of the symptoms of AS except for the wonderful fusion which because I'm female may never get. I've heard it's the female hormones that prevents this fusion. I've been referred from doctor to doctor. Each one found a bit more to the puzzle but they all ended up with "that's all we can do for you." Well after spending so much money I used what I thought was my last option, to try epidural steroid neck injections. After over a week it seemed to kick in but my back still hurt. I broke down in my bone and joint doctor's office because they once again got my prescription wrong he said I needed to talk to someone who can spend some time with me because I was depressed. Well I went nutty after that and couldn't tell people what was wrong with me for anything. They all kept referring me to each other. Once my boyfriend got me calmed down enough he took me to the emergency room and they did a CT and found out I had a maningioma brain tumor. I had surgery to remove it last Tuesday. And guess what? They have also been connected to hormones. I'll be changing my PCP as soon as all of this is over. Even after I told her I couldn't sleep because of the brain tumor she wouldn't believe it. She said it was a mental problem. Well guess what, tumor is gone and I can sleep and my Darvocet works a bit better. Imagine that. Don't give up if you feel like something is really wrong.

Sharon

Hi Jill,

I believe in a former post you stated you were HLA B27 positive.... if that is the case and many of pain symptoms you read at this site are similar to yours, I would suspect you do have AS.

I have never had an elevated ESR... but I was HLA B27 positive and at times in the first year while attempting to get a diagnosis I could barely walk my right hip hurt so much. When I finally got X-rays nothing showed on the right side... only the left hip which had hurt 5 yrs earlier for one summer. There they saw the fusion that lead to the diagnosis... not where I had the pain.

The fusion results from years of pain and the body combatting naturally. If this rheumy is not up enough of their AS, it may be to your benefit to educate them or look for a new rheumy.

You could research and tactfully present information from this site and others.

Best wishes to you,

Tim

Dear Jilligan,

I am a 55 year old woman, I am NOT HLA-B27+, have a normal sed rate and I have AS. There is no doubt. I saw a neurologist (Aug. '05) who prescribed an MRI, CT scan, EMG and about $800 of blood work. She said I had herniated discs and sent me on my way with some prednisone. It didn't help. Nothing helped. My knees ached, my neck ached, my shoulders ached and my whole back ached. So I saw an orthopedic surgeon who took 1 x-ray and said he thought I had AS. From there I found a fabulous rheumatologist and am now on Remicade. It is helping. More and more with each infusion.

I'm lucky(?). My journey to a diagnosis was pretty fast. Don't give up. Try to find the best rheumy you can by getting some recommendations. You did not see the right doctor, I am sure of it. Please try again.

Hugs and good luck,
LadyBones

Hi Jill,
Sounds like you and my mom are seeing the same doctor. My mom just had a similar, and terrible experience with a rheumy in Vancouver. It makes me just so mad that this happens. I really feel for you.
For years my xrays were normal, and my sed rate and CRP has always been normal. They could only tell in the beginning, from an MRI. I've never been tested for B27, but my mom is positive.... and fused, I might add. Grrr...I hate that my mom can't get treatment because they can't make a diagnosis...where do they think *I* got this illness from???
It's so unfortunate that they need physical evidence, when treatment before this damage occurs is ideal! I went through many doctors before I found a good one. Is there a possibility you could get a referral to another rheumy?
Hang in there. You are NOT alone!

hi
sorry to hear u have had this trouble with ur rhuemy, iy really is so frustrating when u hit a brick wall like this. i have hit many brick walls recently tryin to get a dx, i am still trying to get a dx. i know from personal experience everytime this happens it feels like u have had the stuffin knocked out of u, and u wonder if u r ever gonna get the dx. the only thing i can advise is to keep fighting for a dx. find another rheumy. pls dont let them dismiss u like this, it is after all us who have to live with this excrutiating pain, and we have evry right to have a proper dx.
i did the physio thing several years ago, pls pls b very careful if they suggest traction, i now have nerve damage from it.
hang in there, u will get there in the end.
take care
heather

Hi Jill,
This disease can be the most frustrating thing. Some days you only have to look at me funny and it might start the tears.
I had a doctor for years that diagnosed everything I had as muscular. It became a joke, except now that I think about it, not a funny one. When he refused to fight my insurance company for Celebrex (they said I wasn't old enough, nor was I bleeding from ulcers) , that was the last straw. My gastro and orthopaedic doctor got the approval for me.
I then consulted with my neighbor (who is an experienced nurse) and found a great GP. He was smart enough to do the right tests and send me to my Rheumy. So now, I have a team of doctors that I trust. I have a great GP, a Rheumy that I trust (having talked to other health professionals and patients also), and my Gastro that has treated me for 14 years. My ortho doc. has retired but I'm working on that. I guess what I'm trying to say is - don't give up. Find a doctor you trust and get another opinion. Like everything else, there are good ones, bad ones and average ones.
Good luck and hang in there, you're not alone. Wanda

Nonnie, thankyou so much for emotional boost. It is really nice to read from you and others who have had similar situations. I think that I am going to book an appointment with my GP whom I really trust and talk to her about it. I liked the rheumy alot...she is very nice in some ways, but I did kind of feel passed off. She did say that it isn't in my head that the pain I feel is real but that I am worrying too much and that I shouldn't have done so much research about AS because she said that I have filled my head with too much information that doesn't apply to me. Whatever! Unfortunately I live in a smaller town with only 2 rheumy's so my choices are slim. I haven't heard that many good things about the other rheumy in town so I don't know what to do.

Anyways, thanks again.
Jill