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Joined: Mar 2014
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Jeffery Offline OP
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I was diagnosed with AS by my primary care physician and sent to a rheumatologist. I have all the symptoms of AS but as I am very early in the disease and diagnosis, i don't have any SI joint damage. My rheumatologist is telling me that if my MRI doesn't show any markers on my SI joints (my x-ray didnt show anything) then I don't have AS and i'll need to go to pain management. I'm already taking 6x50mg tramadol a day and i'm bedridden/suicidal. WTF am I supposed to do here? Does anyone know a decent rheumatologist in Arizona?

Last edited by Jeffery; 04/09/14 06:24 AM.
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Veteran_AS_Kicker
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Good morning,
I just saw your post and thought I would suggest some things to do.
First thing is to take suicide off your plate of options. Be patient and calm down, things will work out. Thats why patience is a virtue, and a virtue is a good thing.
There are better options and in time they will be present. And you will not regret killing yourself. You have the support here from many caring people to manage your feelings and come up with a solution. we here at kick AS are a group of problem solvers and fighters.
Tell us more about your situation and your pain and history and we can go on from there.

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Very_Addicted_to_AS_Kickin
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You live too far away to go where I went.

I couldn't get diagnosed by ~4 different rheumatologists so I finally spent my own money to fly to Philadelphia and go to Brent (at Einstein) because I liked the papers he had written about AS vs undiff spondy. I figured if I had no evidence of fusing, not enough damage on my scans for the doctors to dx AS, then I needed to go to someone who would dx me with undiff spondy.

With that dx on a piece of paper (letter back to my GP), was able to use that to get into the good practice in town that doesn't take new patients unless another doctor fights to get us in. Because my GP wouldn't do that, had to get the out of town rheumy to do it for me.

This in town rheumy started at undiff spondy, now just calls it spondy, but here with my insurance, that was enough to get on Humira.

It was a long trip with many doctors. I was about where you are now, minus the contemplation of suicide, but I didn't care if i lived or died. But am here to say, it does get better, so hang in there.

Do you have the money to fly to another state? I know when I was looking around, I liked the info about undiff spondy on cedar-sanai's webpages:

https://www.cedars-sinai.edu/Patients/Health-Conditions/Undifferentiated-Spondyloarthropathies.aspx

I think for me, finding someone who believes that undiff spondy is a real, and just as serious disease, that needs to be as aggressively treated, as any other spondy, was the turning point for me. And it could be for you?

If I lived where you do, I'd take a plane out to Cedar-Sanai and see about getting the dx. Then with that piece of paper, maybe you can get treated closer to home.

Though too, Dr Brent in Philly was treating me long distance and would have continued to do so if I hadn't found a local rheumy that would help me. He and I emailed; he'd call in a new nsaid at CVS, I'd go pick it up, report by email how it was or wasn't working and side effects, then on to the next. He would have moved me to SSZ then to biologics if needed….then about that time, I found my local rheumy…..and he picked up where Brent left off.

Up to that point, the PTs, pain management, physiatrists, and orthopedists did help continue putting me back together every time I flared, but that was not the optimal situation. It would take a month for my SI to recover enough to walk, several months before it was almost normal, and the flares just ran into one another. Now, if I flare badly, methylpred clears things up in a week, not in months. And Humira makes everything better.

The best thing to do is to find a doctor who will help you. Which is exactly what you are trying to do. Don't give up hope, please.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
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Hello Jeffrey,

That part of Arizona do you live in? I used to live in Chandler, but cannot recall name of rheumy I saw as has been a long time and I did not see him all that often after changing to No Starch Diet.

The SAA website used to have information for a group of people with AS that met every 2-3 months. I belonged to the group when I lived there. You may want to try and contact that group if you can to ask one of the group members if they have someone they recommend.

How did the GP diagnosis you with AS? What are your symptoms?

Best to you,

Tim


AS may win some battles, but I will win the war.

KONK - Keep ON Kicking
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Very_Addicted_to_AS_Kickin
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Originally Posted By: Dotyisle
Hello Jeffrey,

How did the GP diagnosis you with AS? What are your symptoms?

Tim


Hey Tim, I went back and found Jeffrey's original thread, the info is in there:

https://www.kickas.org/ubbthreads/ubbthre...1842#Post501842



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Sep 2001
Posts: 6,162
Likes: 13
AS Czar
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Hello, Jeffery:

If pressed, I could name about ONE rheumatologist in the entire world (Australia, btw) good enough to recommend; the more than 20 I have seen were nice guys, some smarter than others, but TOTALLY USELESS when it came to AS.

mri will not usually show AS activity, it is better to get a nuclear bone scan and test ESR/CRP. YOU ARE B27+ so AS diagnosis is a SLAM DUNK. ANY different competent rheumatologist will give You a diagnosis: Call around and ask the nurse "I'm B27 positive and have long-term characteristic symptoms of AS--if I came in, would the doctor give me the correct diagnosis?" The correct diagnosis is "PRE-AS" until You have actual X-ray changes.

AS is worse in the early stages, but I hope You could keep up with the fasting long enough to kick-start Your NSD; 5-6 days until considerably reduced pain has been my experience.

You may be able to help yourself "nuance" a personal diagnosis by checking out my dropbox page link "Important AS Resources" in signature below.

Hope You find Your answers soon,
HEALTH,
John


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If you haven't already, trying performing Internet searches that specify your city (or cities you're willing to travel to) and the words "rheumatologist" or "rheumatology" and "ankylosing spondylitis" or "spondyloarthropathies." After I found a list of rheumatologists in my city, I performed individual searches for all of them and checked out their websites if they had one. Only one site bothered to mention AS on the list of conditions the practice treats, so they were my first call and I wasn't disappointed.

Tramadol has proven useless for me so far, but I can't take NSAIDs and don't want narcotics. If your options aren't as limited, it sure as heck sounds like it would be worth pursuing something else.

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I'm in a fairly similar situation to you - I got a diagnosis from a private rheumatologist but the NHS one isn't accepting it, so no treatment. I did go to pain clinic and that has been quite helpful, plus GP prescribing short courses of steroids. I also had GP prescribe full strength NSAIDs until I got to the point that I couldn't tolerate them any more, and that really helped while I took them. The other things I've done to try and keep things under control was basically treat myself "as if" I have AS, whether I have a formal diagnosis or not. That meant trying no starch diet (am now on low starch, as no starch didn't give any significant extra benefit) and doing the AS stretches regularly to keep myself from seizing up completely.

So, even if you can't get a formal diagnosis from the rheumatologist, you can still likely get access to some meds, and you can still do all the self help stuff, and who knows, if you keep getting followed up by rheumatologist they may eventually confirm your diagnosis anyway.

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Very_Addicted_to_AS_Kickin
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good points here smile

I tried to get into the "AS rheumy specialist" in town, but the practice would only allow me to see "the gatekeeper" (as I called him). "The gatekeeper" stated there was not enough inflammation to dx me with an inflammatory arthritis….needless to say, the other doctors (PTs, orthos, physiatrists) that were constantly trying to put me back together were as pissed as I was.

When I went to Brent in Philly, he tried to get me into that AS rheumy specialist up here, but the practice said that since I had seen that other doctor (the gatekeeper) within two years, that was who I had to see. I refused, stating that he told me I didn't have an inflammatory arthritis and refused to treat me, so how would that be helpful. So the two doctors' offices (brent and the AS rheumy specialist up here) went back and forth and back and forth.

And while that was occurring, I tried to also get in to see Dr P. I had tried that on my own 4 years prior with no luck. 3 doctors and 4 years in between trying to see Dr P and seeing Dr Brent, no help from any of those 3, just lots of uselessness and frustration. Then with Dr Brent's letter, that was the magic key to getting in to see Dr P. That was 3 years ago. Now things are vastly different as discussed above.

One of those 3 doctors in those intervening years was the one rheumy in town recommended in the SAA (http://www.spondylitis.org) booklet of doctors you can get if you are a member. Worse-Doctor-Ever! He was mentally and emotionally abusive to me. I had to take my husband just to make him be a bit nicer to me. But never in the 2 years that I saw him did he help me. Instead he kept trying to convince me that I had OA in my SI, just OA. Called the enthesitis "enthosopathy" which can mean "disease of" or can mean "enthesitis" but when I asked him to define it as one or the other, he evaded my questions. He just acted like he didn't think I was so bad off. He had me try some NSAIDs (but other than Aleve, Dr Brent said the other two were old useless ones for inflammatory arthritis and had no idea why that doctor would prescribe them) and then just kept saying all the other drugs were "just too dangerous". But you know what: inflammation is just too dangerous too.

I share this to say, don't do as I did. Move on faster. If a doctor refuses to dx or treat you, find someone who will help you. Find someone compassionate. Find someone who cares. Don't let anyone cause you to doubt yourself. I'm not saying that you would, but I definitely wasted too much time hoping that the rheumy I saw for two years would see how much I really did need help. Maybe give people a chance for a little while, but two years is way too long to not be helped by one person. In all fairness though, I was planning on going to Dr Brent a year earlier than I did, but I flared so badly, so much worse than anything else before, that I couldn't travel anywhere for about 9 months, then had to wait another 3 months to get in.



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Aug 2013
Posts: 215
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Second_Degree_AS_Kicker
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Just keep looking for a dr who will make a diagnosis based on clinical findings. I got treatment by finding a good dr and getting mris of joints (hand, shoulder) showing the inflammation even though there was no damage. My si joints showed up normal on the mri without contrast but my dr still believes me when I say they are inflamed and he diagnosed me with "inflammatory arthritis". He suspects I have some type of spondy arthritis. Get a mri with contrast or with specific sequences that will show inflammation. A regular mri won't always show the inflammation. I take sulfasalzine and it's helping a lot. Meloxicam also helped me but I've been able to get off it thanks to the sulfasalazine.


Everything is okay. Trust yourself, and do not live from a place of fear.

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