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

Hi Buggy,

Yes, my dr. suggested salmon oil. I was taking flax seed oil and he said that salmon oil might be a better choice. So I bought the 1000 mg capsules and started out with 3 per day and just recently increased to 6 per day. It seems to make a difference.

You know I used to love salmon but have eaten so much of it lately it is not my favorite anymore.

BTW- How is Robert doing? Hope he is feeling better.

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

Great...I'm going to give it a try. I need to add more supplements to my diet. The antibiotics really seemed to help my hands and feet so I'm looking into that as well. It is the first time in about four years that I have had no stomach pain either. It's an incredible feeling.

Robert went to the doc today. He is scheduled for surgery January 15th. The doc said they are not sure if it is gallstones or not. The good thing is that his bloodwork comes out fine. The bad thing is that they see a very big mass. They said melanoma can attach itself to an organ and spread quickly. They said they wont know till they go in there. We are praying its gallstones. I am not sure about bloodwork but I would think it would show some abnormality or detection of cancer cells. I dont know. But they said if his gallbladder is infected it could do that as well. Because he had most of his stomach removed three years ago...they cant go in through his belly for the laser surgery. He's going t have to get the old type of surgery..the big cut. He's a tough man and I admire his will and love of life. Thank you for asking...

hugs]]]


Buggy

You are not crazy, you are more of a classic case for women, sometimes it takes us years to fuse - - I had AS for about 25 years before there were any radiological changes, lots of pain, loss of mobility, etc., but no fusion. That's why back then I was DXed with RA - - had peripheral joint involvement so at least there were some "visual aids" for the docs to see - - and a nuclear bone scan that showed extensive inflammation of my spine. Now my SIs are fused and there's damage to my lumbar and cervical spine. The good news though is that you are NOT fused. The meds I'm on now have managed to prevent further damage to my spine, wish they had been around 20 odd years ago - - and I had a rheumy who would have prescribed them.

Just because you're not fused does not mean you get a free ride, the inflammation that causes the fusion is there, all right, and that can be very painful as we all know. And at least you have a rheumy who recognizes the symptoms of spondylarthropy, or early stages of AS. Many don't and would refer you to a shrink.

Cheryl

If you can't be a good example you'll just have to serve as a horrible warning.
Jennifer Cruisie

Dogs don't care how much money you make

Its funny you say MRI's dont show inflammation. I didnt know that.

My rheumy gave me a pelvic MRI, and says since it showed no inflammation, he cannot yet confirm AS........

I agree with Wind Rider. I have 5 fused levels in my spine (none of them the SI joints), I had my Achilles' tendon area light up on a neuclear bone scan, a history of genetic neck pain, 2 Rheumeys tell themselves out loud that my neck fusion is "typical of juvenile AS"........and I still am not officially dxed.....with ANYTHING.

All I keep hearing is "fibromyalgia", "it's congenital (which = "you were born with it") "All your blood tests are normal so there can't be anything wrong with you", and "You can't have AS because you're female".

Blech. Just gimme something good to keep the pain at bay and to heck with a diagnosis. I'm almost fed up with looking for one.

Rox

Because Happy Bunny 0\/\/|\|z and you know it.
http://www.geocities.com/artisan1998.geo/index.html

Hi John..

Yes the Azulfadine my doctor prescibed is EN coated, however, I tried Celebrex several months ago and after 2 weeks, I started itching due to allergic reaction.. so there is a possibilty I won't be able to take the Azulfidene as it is sulfa related also. I only got a week's supply to see how it goes.

I am starting back on a NSD today.. It was a huge benefit to controlling my diabetes and helped with losing weight. My pain level decreased when I was sticking to it last year. Along came vacation and I fell off the wagon.. So I will let you know results in a few weeks.

My doctor has never mentioned a bone scan, however when she looked at my regular x-rays a few months back, she pointed out that there was some blurring and that my hip was bone-to-bone.. This time I saw another doctor, who was only reading the report from the medical facility. I am wondering how acurate the report is, as I have read that rheumatologist are better trained to look for subtle changes that most radiologists overlook.. Any thoughts on this?

HI Cheryl,

I am happy that my doctor is starting more agressive treatment. My neck is a big mess and from x-rays there is some indication that I am beginning to fuse in my thoracic spine. She has mentioned Arava or some of the other meds, but she is following the protocol that is necessary for insurance coverage. We started with Vioxx. I have just had Azulfadine added and if that doesn't help, we will move on.. She mentioned MTX but I am a little scared to try it because of the side effects.

It is a shame that women are treated this way. Why is it that when research is done, they always seem to use men as the test subjects first and never seem to pay that much attention to women's issues? By the way, the first episode of chest pain from inflammation of my ribs and breastbone sent me to the hospital.. After catherization, they ruled out heart disease. When I went back to my GP for follow-up, she just shook her head in a patronizing way and said, "It's not your heart, i jist think you're depressed. I want you to try this prescription." Never mind the fact that I had been to her numerous times with various complaints (shoulder pain, knee pain, extreme back and neck pain)... I guess if you have enough problems, they just assume you are depressed (who wouldn't be?)


Denise

Hi, Denise:

The radiologist should have the best 'X-ray eyes,' but now that I have said that I have to complain that most do not do such a thorough job and the good and bad is that they are looking at the images 'blind' (no input from patient).

The experts I spoke with (and I'm going to follow this one up on Thursday) don't see inflammation on mris--they see 'deformation' and a cloudy film can mean infection--a suggestion I once got about my pseudo arthrosis (vertebral fracture clear through). I would call the radiologist on the phone and ask him to study the out of focus areas with his 'inflammation sensing' glasses on. My radiologists "final" report went back for edits several times.

We should not have to wait for damage to be diagnosed or treated; the treatment should allow us to avoid damage. That does not mean NSAIDs, but DMARDs (like the Azulfidine and LSD/NSD). And there should be no wiggle-room: Anti-TNF treatments for RA and AS are exactly the same...

Good luck with the Azulfidine-EN; I hope you can tolerate it and remember to take the folic acid (3-5 X RDA).

Plenty of vitE, cod liver oil, and borage seed (or evening primrose) oil while you climb back onto the slow moving NSD wagon; hope that you feel better soon,

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'

I know exactly what you're talking about!!!!!!

I did an MRI recently...after xrays and a nuclear bone scan...both of which my doc said showed no changes, therefore my insurance would not consider paying for Enbrel...my doc sent me for a 'pelvic exam', the insurance company put up a fight over that, but I went in....and the radiologist said that a pelvic exam would not cover the sacrolaic joints or lower spine that my doc wanted covered, and that MRIs do not show the inflamation my doc is looking for...this was all to appease the insurance company, and instead of sitting under the magnet for forty minutes, it was two hours!!!!!!! I nearly died in there, my legs and arms went numb, and my hips hurt so bad that when I was finally done I couldn't get up off the table...I would not wish that on my worst enemy...well, ok, my worst...

I agree with everyone here, just because there is no fusion to see on film, does not mean you don't have inflamatory activity for years on end....PAINful inflamation...that must be STOPPED....
Hang in there, keep us posted, you rock...
Linc

Linc O'Brien

I totally understand what you are saying. I cried when they told me they found nothing in my ct or x-ray or mri. I thought I was losing my mind. I am going back on a strick NSD to see what happens. Problem with me is I can eat starch for awhile, then I have a massive flare up. So, I am trying again. I have found that I have to be my own doctor, do my own research and try my own (and those I find on this site) approaches to being able to tolerate this.

Linda