Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group What if nothing has shown up on imaging???

I'd really appreciate any help on this...

I've had symptoms since 1999 (23 yo), but wasn't diagnosed until 2006 (30) after the typical uphill battle with doctors telling me I was crazy, etc. The AS diagnosis was a blow, but ultimately good in order to treat my disease properly. I've taken Humira and pain meds and fare pretty well, all told.

Recently, I moved and my new rheumy had new MRIs done (which I'd been wanting for a while). The MRI doesn't show inflammation, fusion, or degeneration. Nor do the x-rays. Before, this "lack of evidence" was considered acceptable because I was in the early days of the disease. But now...

...now I'm afraid they're going to throw me back into the crazy pile, where I don't get proper care and suffer needlessly. All my symptoms are classical AS (worse in morning, or after staying in one position, flares, exhaustion, typical patterns of AS pain, etc.) I don't have HLA-B27, nor iritis. But the rest? AS is the most relevant diagnosis, and I've never had it called into question until now.

My question to you guys: Have you dealt with a similar situation? How long did it take for anything to show up on imaging, *especially* if you are a woman?

Thank you for any stories you can share -- deeply appreciated

-M

Dear Miranda,

I have been diagnosed since autumn 2011. I have had overt back symptoms for about two years now. As in your case, nothing has shown up on imaging. I live in Europe and in my particular country a positive MRI scan is an unavoidable prerequisite for receiving biologics treatment. This is one reason why I am still on NSAIDs. At the current rate, though, it will be many more years before anything shows up on those scans, because I have achieved mitigation of symptoms with diet (mainly intermittent fasting). I completely understand your concern, since I have been denied alternative or perhaps more effective treatment due to not exhibiting any inflammation or degeneration on MRI. At the same time, I am glad that there isn't any! Fatigue is what has given the biggest blow to my quality of life. So unfortunately I am not in a situation to give an assessment as to how long it may take for anything to show up. It probably may vary greatly from patient to patient.

Best

Artur

I'm sorry, Artur, that's *far* worse than my case. That's horrible. I thought access to biologics had improved in Europe (at least in the UK?), so I'm so saddened to hear this.

Any chance you could try to get them for free from the drug company if you have a doctor who's willing to write a script for them? I had to do that for a while when I was in between insurance coverage here in the States -- seems like they'd also offer that for European patients, but I may be wrong. Here, they'll give them to you for free for six months if a doctor has prescribed them and you can demonstrate you cannot afford them (and who can? $2000 USD for four weeks!)

Thank you for your response -- and good luck...

-M

Hello, Miranda:

The mri and even X-rays are not very effective at finding the inflammation so characteristic of AS; nuclear bone scans are much better, but still not fully reliable.

The thing is, YOU know where You hurt and this pain is NOT due to direct injury; it is obviously inflammation.

Regret the HLA B27 serological test is not very reliable, either; Fc or ELISA should be de rigueur (IMHO), especially for women with symptoms.

It is a painful situation because many women, despite the pain from inflammation, might never fuse; it has been suggested that, overall, the protracted pain and frustration of being mislabeled (fibromyalgia is the most common misdiangosis), women with AS have a much tougher time than men. Regret the bias against getting a proper diagnosis for women.

AS is so individualistic that even an answer to the question "how long to damage?" cannot be relied upon and especially for women. For men this disease has very common traits and symptom progression; much less so in women due to many specific gender-related factors.

For the B27 positive person, Professor Ebringer has offered six definitive symptoms for diagnosis of "Pre-AS" but I wanted to expand upon this, and this information may be of help to You in "nuancing" a diagnosis. If interested, please check out my "Important AS Resources" link in my signature below; there is a diagnostic page.

HEALTH,
John

Hello M,

Yeah... being on the "crazy pile" sucks. Hopefully you can get this sorted out... fact that you are not HLA B27 positive or evidence of fusion probably clouds the issue for some rhuemies if they are "old school".

Best advice if you believe AS diagnosis accurate is to learn more and work with educating the doctor.

If the diagnosis changes, what does that do with the treatment you now have? Will it all of a sudden change drastically?

Best to you,

Tim

i've been dx'ed with spondyloarthropathy or undifferentiated spondyloarthropathy or i think recently maybe with "crohn's" as that's what the humira info says on the electronic med page of my doctors' portal.

To me it hasn't mattered what its been called because my doctor has been able to get humira approved for me and its been splendid. oh sure, i have flares and such, but compared to before humira, its like night and day.

no evidence of fusing here, after 16 years of really bad flares / symptoms, and thus maybe never will fuse, who knows. just some bone spurs / osteophytes and such, that for a long time doctors said were "typical" and "common", who knows.

i am hlab27 negative and don't get iritis / uveitis either.

my symptoms are:

SI joint inflammation

cervical spine inflammation and bone spurs pressing on nerves causing muscle spasms

enthesitis...everywhere...you name it, i've had it there....wrists the worst, followed by feet (before, feet much better now), followed by maybe hamstring tendons or where the IT and TFL bands attach to the trochanter or.....when i finally found a doctor to dx me, when he asked which joints were worse, i told him "well, my elbows have always been pretty good!"

enthesitis so bad i've torn numerous tendons and ligaments. no ruptures but a few bad tears that have taken 1-3 years to heal up enough to function again.

GI inflammation: gastritis and inflammation and crohn's like ulcers in my ileum and diarrhea (with undigested food) and constipation

dry eyes (but not inflamed)

mouth sores

"butterfly rash" but only on my cheeks, not over the bridge of my nose

fatigue

flares

aleve helps

methylpred really helps

humira really helps

a little bit of psoriasis

erythema nodosum when i flared badly


prior:

flares of constipation since a child, gastritis since 30, joint stuff since 35 (1998), then the other stuff slowly started joining in.

several rheumies stumped or said not enough evidence of inflammation or said they couldn't help me,

finally in sept 2010 flew to another city in another state to be dx'ed by Dr Brent in Philly. He's written some very good papers on AS vs undiff spondy. within a minute or so said "well, clearly you have a spondyloarthropathy, let's figure out which one".

then with his dx, able to get into a good practice up here in april 2011. before that couldn't get in, tried since 2007. we first tried just using the methylpred for flares and supplements in between flares. i did feel better in between flares and the methylpred was amazing. but we both knew i couldn't use it as often as i was needing it (every 10-13 weeks) so we both agreed it was time for humira in june 2013. and the rest is history.

i'd say for you, document before humira and after. show / prove what a difference it has made in your life. then i think they'd be hard pressed to take you off of something working so well.

when i see my rheumy next, i will tell him, "this is the first fall since 2008 that i didn't feel "this close" to disability!" statements like that really help my doctor convince the insurance companies that i'm a good investment regarding the humira.

Thank you John, Tim and Sue --

@John: One doctor tried to paste the "fibro" label on me once but didn't get very far.

@Tim: I'm not sure how it would change my treatment, but we live in a constant state of fear, right?

Afraid we're not going to be believed/taken seriously.

Afraid we'll be left to suffer so insurance companies save money.

Afraid doctors are going to let us suffer to avoid having to deal with controlled substances, even if it's a lifeline for basic functionality for so many of us.

I'm just tired of having to constantly have to fight all these little battles that are slowly adding up to 5-10% of my waking adult life --- I thought that when I was diagnosed 8 years ago, all of them would diminish and normalize. They didn't go away entirely, but they did subside with finally getting a diagnosis. I just can't handle being tossed onto the "undiagnosed" pile again. I'll lose my mind.

@Sue: Thanks for being another data point RE women tending not to fuse. This has been my understanding from the reading I've done, and hopefully my new Rheumatologist as well. We'll see.

-M

Did you get the mris with contrast? If you get the regular mri then unless they use the correct sequences (Stir is one of them, I don't remember the others but you can search this site for threads about it) then the inflammation may not show up. Also try to get the mris when you are in a flare, but I know that's not always easy to do. And get a mri with a good magnet, no open mris, and a level 3 is the best magnet.