Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group I Don't have AS!

In 2007 I was diagnosed with AS.

That diagnosis would have stuck (as my condition worsened and my medications increased) but I had to go through a barrage of tests and interviews with my Total and Permanent disability insurers doctors.

So after many specialist visits and communications between the insurer's doctors and my doctors, they have come to the conclusion that I don't have AS, but instead, it is Inflammatory Arthritis, Fibromyalgia and Osteoarthritis, and of course, depression (which I disagree with).

I wonder how many other peoples diagnosis would be changed if their condition was also put under the microscope?

It would seem that AS is the bucket sitting there for Inflammatory Arthritis/Fibro symptoms to be thrown into.

As I say, if it wasn't for the insurance company trying extremely hard to come up with a way of not having to pay me, I would still (technically speaking) have AS!

James

well then, what kind of "inflammatory arthritis" do you have? i thought that was just a general umbrella term for "we know you have some kind of inflammatory arthritis / autoimmune disease, but we just can't decide which one it is (the symptoms don't fall under any one disease well enough) or it may be one that doesn't have a name yet". can "inflammatory arthritis" be a specific "disease" and more importantly, my rheumy seems to think he can't allow me to try drugs past the NSAIDs (though i talked him in to LDN) until he's classified exactly which specific disease i have. also, how did they decide that you don't have AS? what symptoms do you have, do you not have to make this determination? and do you still get to keep the embrel?

just curious...........

though also selfishly asking because i have inflammation of the entheses without any evidence of fusing, gastritis without any evidence of IBD, so very similar to the known spondyloarthropathies but different. most of my doctors either think its a form of spondy or "some as of yet to be discovered form of autoimmune inflammatory arthritis" which would be ok with me if they'd just give me the drugs! though the LDN and flector patches are making life more bearable (to go along with the zanaflex that i've taken since the early 2000s)

Hi Sue,

Over here in Aus it's a bit different.

I get my Enbrel from the Government, and will continue to do so as long as it is being effective.

My private health insurance makes sure I don't pay anything when I go into hospital, and that I get a single private room.

My income protection insurance pays me 75% of my salary until I turn 65 based purely on the fact that I can't work - it doesn't matter what the diagnosis is.

The Total Permanent Disability insurance is a lump sum which they are not very keen to pay. They are the ones that have had me go to their specialist doctors (hah!) who have concluded I don't have AS based on a lack of fusion - my problem is inflammation in a big way plus all the other symptoms I described above.

So instead of arguing that I do have AS, my specialists have thrown up their hands (cause it isn't worth arguing) and agreed, but said no matter what you call it, I'm disabled.

So that is why techncally I don't have AS, but if it wasn't for the nit picking TPD Insurance Company, I would.

BTW, my previous, extremely knowledgable GP told me that 80% of people with "Inflammatory Arthritis" are unable to work after 10 years.

Your Doc should be trying anything to help your pain! If it wasn't for Enbrel and Lyrica, I would be stuck in bed, in agony.

All the best,

James

thanks jimmy (for all that info and your kind thoughts for me).

so what i hear you saying is that the doctors still think you have AS but the insurance's doctors don't think so because "no fusing", "just" inflammation.

but sounds like you get to keep taking the drugs that work for you, so you don't really care what they call it. i think i might feel the same way, if its working.

and your disability sounds like me getting my handicap parking hangtag,
the state didn't care why i needed it, if the doctor said i did, that was good enough for them. what a relief, finally someone just believing us!

that's an interesting statistic: 80% disabled (unable to work after 10 years). somehow i managed from july 1998 to september 2009 (that's about 11 years) and then essentially took 6 months off of work, but thankfully for me that was not permanent, not this time at least. i will have to make sure my husband doesn't see this statistic because this fall he was pretty much making mental plans to sell the house and move to where he could get a paid position (right now he's focussed on his art). don't know if he was over-worrying or if i was in denial. reading this stat, i think he may have been the realist and i may have been in denial about just how bad i was. i do tend to be an optimist and believe "this too shall pass" because it always does. but i've also worried that next time i may not be so fortunate to recover.



and thanks for that sentiment. i do agree. yes, my GP (who is retiring next month so by default i'll be getting another) and rheumy really seem to drag their heels, but i think its because until recently they didn't see my pain. i'll tell them, but i'll be there on a good day and not a bad one, and they're the kind of doctors that have to see it to believe it. finally in the fall, the GP and rheumy saw what i've been warning them has happened to me in the past, what i've been begging them to prevent, but finally they saw it and helped a little more than normal. that's when i was able to convince the rheumy to let me try LDN and was able to get the GP to give me the flector patches. GP also allowed me to try a triple NSAID topical creme recommended by the compounding pharmacist. also was able to talk the rheumy into giving me prednisone to keep at home for an emergency, basically told him i wasn't leaving the office til we had something to prevent another free fall like i went into this past autumn. kind of sad that i was the one to have to ask for all those things (as most people wouldn't have known to ask for them, but you all have educated me well). really the only things the rheumy still won't consider are "autoimmune drugs" (besides the LDN) because we both agree that the SSZ will probably make me too nauseous the way a sulfa antibiotic did in the past, we both agree that MTX would probably not be a good drug for me due to the things i already have going on especially in my stomach (though there are people on it, i've heard enough bad things about it, i really don't want to take it, and the first visit the rheumy said if it looked to him like i had AS, i'd have to try MTX first, though other rheumies in the US go straight to the biologics. and then there are the biologics, to me, the thing to try, but that's not an idea he will entertain because.......well, i have a bunch of theories but no proof so i'll just leave it at that. but yes, until the pain doesn't make me disfunctional, i think we should be trying harder.

but with all of that said, my other doctors haven't let me become disfunctional lying in bed. the physiatrists have kept me functional and often largely with limited pain. they've sent me to PT, who in turn taught me the virtues of ice, heat, and ultrasound, along with exercises and such. they've given me trigger point injections, SI cortisone injections, prescribed TENS and IF Stim, prescribed zanaflex, prescribed lyrica (which did not work out), prescribed the cox2 inhibitors (which did not work out). and the podiatrist and endocrinologist and orthopedists that gave me cortisone wrist injections have all been wonderful as well. the gastroenterologist and dermatologist also very helpful. i think so long as you have at least one doctor in your court, then you can get through it all. but i do find it ironic that the profession that treats what all the other doctors say i have, have been the ones to not be very helpful. but thanks to all those other doctors, i'm largely getting by.

I'm not sure what to say Jim.
Please stay at KA, b/c whether you've got AS or IA, we all understand the physical pain and we are still your friends.
Hang in there
Felicity

Jimmy, wow, so just because you don't have signs of fusing these docs say you don't have AS? That's weird! Many of our young ones here are diagnosed without signs of fusing, that takes years for those signs to show up.
Cindy

Hi James,
regardless of what label you get, glad you are here!
: ) Jan

Hey James,
If you dont have AS that must mean your a reject

Sorry what ever you have your still a special person here.

Kevin

I suppose that is good news James! Or is it? Personally the knowledge of something known helps me, but perhaps the new diagnosis will be a positive. Good luck with the new tactics for treatment and to ongoing good health!

Peace

Will The True Diagnosis Please Stand Up!

In June 2007, I began having severe neck pain that did not go away but, instead, spread down to my shoulders and arms and eventually down my spine in to my hips, legs and feet. Before June, I was a solid 165 lbs, benching 300 lbs, ate like a horse and I was riding high and strong in my career. That all changed. I was inititally diagnosed by an Ortho. as having Cervical Spondylitis. I treated with him until Dec 2007. By then I was in severe pain every day, and it had spread down my back and settled in my hips. I got a second opinion after that, and was diagnosed with having Polymyalgia Rheumatica. He referred my to my current Rheumie, with whom I've been treating since Jan 2008. After the MRI's and XRays, I was diagnosed with my current disease, Ankylosing Spondylitis. He began an aggressive treatment plan, including biggies like Methotrexate (severe side effects), Humira (worked for a while), Enbrel (increased my pain and did nothing else), and finally Remicade (severe allergic reaction), Simponi (not effective) all the while on a base of 5 other medications, not including the ones from the Pain Management Doctor and the Psych doctor (yes I am depressed). My dad died of Acute Myeloid Leukemia 3 months after my initial diagnosis. Add the incurable disease diagnosis, loss of job, loss of income and mobility etc, and yes, I can say I'm depressed. Who wouldnt be?

But there are a lot of people who have it worse and I am fortunate to have 2 Cobra payments left to at least have health coverage for 2 more months. After that, I cant get my meds or see my doctors. Its finally happened. I've run out of money and my SSI appeals hearing is still 2 months away. I have fought the good fight for 3 years and its a miracle I've lasted this long.

I dont know what the future holds but I have my integrity and I am a survivor. If I dont see you all, its been nice having the privledge of being able to read everyone's posts and taking from them and in the same spirit, trying to give back by sharing my own experiences with AS. God Bless.