Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group HMMMPH! MRI SAYS I'M "NORMAL"

Happy New Year...

After a month, I finally got results back from the MRI for my hips and SI joints.. The doctor I saw (not my usual physician) said it was good news.. No erosions, no sclerosis and no indication of sacroilitis.. hmmmph! sure doesn't explain the intense pain I experience on a constant basis.. I'm really aggravated and confused now... I was sure it would indicate the problem once and for all.. WRONG! The diagnosis is still undifferentiated spondyloarthropathy. She said it is AS that just never fully developed. Whatever! All I can say is it hurts like someone has beat me to a pulp.

She added Azulfadine and Tramal to my long list of prescriptions. So we will give it a try.

Hope you all have a happy, prosperous and healthy New Year!

Love, Peace and Joy
Denise

Denise that is good news becasue you don't want anyof those things. However the fact that the MRI didn't show any of these physical manifestations doesn't mean that you aren't having lots of flares of inflammation causing the pain that is signatory of AS.

ONe fact has nothing to do with the other. Problem is that Doc's, or at least some of them, don't seem to give full credence to complaints of AS'er until the bony changes have happened. The intensity of my AS pain was worse before the evidence of fusion manifested itself. Now that is obvious on films the sharpness of the pain is not as bad, it is however ewver present and extensive throughout my body now. Before it seeemed to just be centralized on a few AS "hotspots."

 
stevec-they also serve who stand and wait

Hi Denise,

I have the same problems and have a feeling there are different types or levels of AS, especially in women. My theory is in most (not all) women the disease is not as aggresive but every bit as painfull.

My blood work is normal, my x-rays, MRI and CT scan are all normal. This in no way correlates to the pain I have experienced. My last rhuemy appt. she said she no longer feels I have active inflammation based on these observations. The truth is I have had chronic back pain for 20 yrs. and there are still no changes in the x-rays.

It seems to make the rhuemy's hesitate when prescribing meds. I have been on sulfsalazine now for 10 months. It helps but it was not a magic answer. I have recently started the RoadBack protocol and added salmon oil (6000 mg per day) The two seem to be making a difference.

I understand your frustration and confusion. Don't let them tell you that nothing is wrong. This is a serious disease with serious consequences and has to be treated accordingly. Good luck and keep us posted on your progress.

Debbie

Plant a seed of friendship; reap a bouquet of happiness.

MRI's are not the miracle tool in some cases. If the inflammation is not causing swelling or change in the surrounding bone or tissue, nothing will show up. That does not at all preclude the pain that accompanies this disease. I have had a zillion radiologic tests, etc. and they are now, 20+ years later, starting to show change.
I felt like such a hypochondriac for so long. If I had any good advice it would be to not lose yourself over this disease. Medical personnel try to separate themselves from the pain and emotions of medicine. That is the way they can keep going. But sometimes you miss the diagnosis by not recognizing that part of the patient.
Just know you are not less of a person just because they downplay or don't recognize what you are going through. Lots of love, Nancy

Hi Denise,

I'll have to agree with everybody above. I've had several MRIs, xrays and such over the past 35 years. Nothing serious ever showed up. I thought for all those years the pain was all in my head until my rheumy dxed me with AS. It was my symptoms and the blood work (HLA-B27+) that came to my rescue. Wow, I'm not crazy after all and neither are you.

Fred

"It's not the size of the dog in the fight....It's the size of the fight in the dog." Mark Twain

Thanks for your responses..

I guess I should be happy that the tests don't show alot of damage yet. It's not that I would wish to have a debilatating illness, it's just that there are no easy answers to the problem. Some people are diagnosed quickly and there is no question about what is happening to them.. With me, I feel like it's all up in the air... Do I actually have a medical problem? Is it AIMH? I think my physician believes me, understands my needs and is trying to help me. But I am the kind of person who wants to know all the facts and then I can deal with the problem. All I know is that my life is dramatically changing. I am not physically able to do as much as I could even last year. How much more will my body continue to decline before something definitive shows up? My doctors know my neck is a total mess and will move ahead with surgery when it can no longer be avoided .. But my lower back, hips, SI joints and ankles are causing so much more pain right now. Walking and standing is becoming more difficult each day. Simple tasks such as shopping, cleaning and cooking have to be negotiated.. Am I willing to put up with aching and throbbing for a few hours if I go to the grocery store and then prepare a meal? I realize that Undifferentiated Spondy is a diagnosis, but it just seems to me that the medical profession sorta sweeps it under a rug. Do they really understand how much pain comes with this illness? I have suffered varying degrees of pain for 20 years, been put through all kinds of tests and subjected to humiliating comments from several doctors. I have been told "you are grossly overweight and out of shape and on a downhill spiral", you are just "depressed", "your diabetes is causing nerve pain" (even though my diabetes has been well controlled for years and nerve conduction tests were negative). In all my life, I have never been a lazy person or someone who tried to avoid responsibilites.. But sometimes this type of treatment leaves you feeling not only physically hurting, but emotionally scarred as well.

I have an extensive family history filled with all sorts of autoimmune problems including AS, Lupus, Chron's, diabetes.. I know my own body... and I know I have a problem. I just want to know what is wrong with me--once and for all..

I know this is a complex issue and there are no clear-cut answers, but it does help me to work through it if I can just express my thoughts. My family doesn't understand my frustration or anger. And yes, I am angry... It's not fair for any of us to have this disease... but then again.. who said life is fair, right?

I will take my meds, go to the pool today and shuffle home afterwards.. Hopefully I will have enough energy left to play with my little grandson. I thank the Lord for giving us the blessings of children.. they are among the best things in my life.

My heart goes out to the rest of the folks here who are going through the same ordeal... Thanks for listening.

undifferentiated SISTER!

A funny for you. I need to make a longer post, but let me quote the latest ding a ling-ling when she had to confront my long lost (long ,long story) MRI, which, of course, did show evidence of changes in my C-spine, just like I knew it would.

"Well, you might have been born with this."
and...the classic....

"Well, we don't know whether or not this would actually be causing your PAIN."
and, of COURSE, the classic....

"your SI's aren't fused."

(my thoughts...)Well, no, honey, you SI's don't fuse until the two hundredth medical professional kicks you in the [####] out the door, and at that point, the damage starts the process. We have femalelosing upsidedown spondy. C'mon, admit it. Look at the nice MRI picture. The woman has something wrong there.

I got a copy of the MRI report, and if "disc protusion resulting in cord compression" narrowing, and bone spurs don't cause pain, I want to know just what does. I was under the impression that when you squished it, it was accepted that the results were painful, that's why you have a SPINE of BONE, to keep the contents from being mushed. At this point I am wondering about the diploma on the office wall.

There, you see? You can have a bad MRI and they still are making up stories. You could have a completely fused spine and they still might be making up stories, like space aliens left you under a cabbage where your mother found you, or something, and that's why you are HLA B-27 negative. It works for them, so it should work for us. We may as well make up our own stories.

Hell, I know what I got, I am a spondy, unfused, I got diagnosed by real doctors years ago, but these current doctors are a trip.

Hey Wind Rider..

I like your term "femalelosing upsidedown spondy"... yep, that's us..

All my disks are degenerating, my cervical vertebrae are stacked like crumbled bricks without any mortar, I have pinched nerves and compressed spinal cord... but why????
What is the cause for all this havoc? No accidents, no one smashed me with an axe... no explanation... It's gotta be "FUDS"

Denise

Hi, Denise:

I don't know the cost difference between a nuclear bone scan and an mri, but I do know that the latter will not show inflammation where the gamma cam of the bone scan will more easily indicate this activity.

I hope that the Azulfidine you are getting is enteric-coated.

Inflammation is not acceptable and is indicative of potentially serious problems which can damage the heart and circulatory system, although most of us have just progressed to fusion this way.

I used fasting to control my more severe episodes until (in a CRAZY moment) I gave in to doctors and their NSAIDs. Downhill after that--and really wish I had taken the counsel of Dr. Campbell more seriously and had the NSD shown to me early enough for it to be a temporary treatment, instead of permanent requirement.

Good luck to You,
John




"Last winter blew so cold no lies, And my fire smoke would not rise;
Soon as the smoke tried to depart, It'd be froze up harder than a landlord's heart"
Robin Williamson, 'Smoke Shovelling Song'

Salmon oil has helped you Deborah?
That's great to hear !
I was just eating salmon today that Robert brought us from the place he works at. It was sooooo delicious. Have been trying to eat more fish since my stomach doesnt enjoy chicken much anymore.

I'll have to add that to my list of supplements to take!
Take care...


Buggy