Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Newly diagnosed, rheumys won't treat me!!? HELP!!!

Jeffery - came across this paper in my cybernet searching this morning, good information on AS, diagnosing, treatment - a useful base of information -

http://rheumatology.oxfordjournals.org/content/47/3/355.full

Evidence-based recommendations for the management of ankylosing spondylitis: systematic literature search of the 3E Initiative in Rheumatology involving a broad panel of experts and practising rheumatologists
P. I. Sidiropoulos1,*, G. Hatemi2,*, I.-H. Song3,*, J. Avouac4,*, E. Collantes5, V. Hamuryudan2, M. Herold6, T. K. Kvien7, H. Mielants8, J. M. Mendoza9, I. Olivieri10, M. Østergaard11, L. Schachna12, J. Sieper3, D. T. Boumpas1 and M. Dougados4

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Have got several of the top international rheumy practitioners involved in this paper. Good paper.

There are many more such papers in the same vein. 'A' Search criteria will be ASAS / EULAR - ankylosing spondylitis (and so on...) pop your own search criteria in the space. Fun checking it all out but don't get brain ache...!!

This is still my advice to you:

https://www.kickas.org/ubbthreads/ubbthre...2308#Post502308

if I hadn't found the right rheumatologists, I'd still be untreated.

You gotta find a rheumatologist who diagnoses based on symptoms (as your other doctors have). One that doesn't have to see you to believe you. One who doesn't have to see MRIs, bone scans, etc.

I have some damage to my cervical spine, my SI, where the lumbar spine and SI meet, but not enough to dx me based on that. At least not according to the radiology reports.

but as you listed your symptoms, they are enough for a spondyloarthropathy dx, if you find a rheumatologist who is open minded enough to see it.

I tried lots of other things (had no choice since no one would treat me effectively), but honestly, the Humira has been the game changer I hoped it would be.

So you gotta keep looking for a rheumy who is good enough.

Read papers (on pubmed), travel to those doctors, get the dx however you need to from a rheumy.

I went through what you're going through so do know, but also here to say that there is light at the end of the tunnel.

I am not trying to be argumentative. I hope that you take this as helpful, not as a criticism.

You are NOT newly diagnosed if you have not been diagnosed by a Rheumatologist. As a general rule, PCPs, GPs and Naturopaths do not diagnose AS. If they do, their diagnosis is not generally taken seriously by Rheumatologists because they are not trained and qualified to render that diagnosis.

May I suggest that you seek out a third Rheumatologist? Try not to get into the fact that you have been seen by two other specialists that have refused to treat or diagnose you. Try to talk to the new doctor without the preconceived belief that you have Ankylosing Spondylitis. It is ok to tell the new doctor that your PCP and Naturopath both think it MIGHT be AS, but do not state that you have been diagnosed. Present the doctor with your concrete facts and symptoms. From your post, they include:
HLA-b27+
symptoms for 10 months (they are not "AS symptoms" if you have not been Rheumatologist diagnosed with AS)
fatigue
sciatica
back spasms
rib pain when breathing
internal (what do you mean by that?) hip pain with joint sounds and weakness (again what do you mean by that - define what you mean for the doctor)
continual aches and stiffness (worse in the morning)
pain in knees, shoulders, and hands (any stiffness or swelling?)
bedridden due to pain (Really truly bedridden or is it a difficulty getting out of bed due to pain?)
The Rheumatologist you consult needs to know that you suffer from depression and suicidal thoughts but those are not explicitly AS symptoms. If your mother has untreated but doctor diagnosed RA, tell them that.

If you do not have sacroiliitis on x-ray or MRI, then it is unlikely that you will be diagnosed with Ankylosing Spondylitis at this point. Depending on what the doctor sees on examination, you may be diagnosed with another Spondyloarthropathy, another form of inflammatory arthritis (like RA), or something completely different. By the way, grade 2 sacroiliitis does not indicate that your bones are decaying. Grade 2 sacroiliitis is relatively minor changes to the joint space due to inflammation.

I know that you are in pain and want a diagnosis and treatment right now. However misdiagnosis and the wrong treatment will probably not help you. Try to present only he facts and let the Rheumatologist do their job.

I'm with Sue22 on this. My case is obviously a spondy case, though I don't have increased inflammatory markers or any x-ray evidence of disease. Rheumy treated at first based on symptoms and response to steroids. It wasn't till I had a persistent rash diagnosed as psoriasis that he moved my diagnosis from 'inflammatory arthritis' to 'Psoriatic Arthritis'. You've got to find a rheumy who treats based on symptoms primarily and all the imaging/labs secondarily. Hope you can find a rheumy who listens to what you are saying.

If you can get them to agree that it is inflammatory, that's the first step to getting adequate treatment, imo. With a diagnosis of 'inflammatory arthritis', I had already trialed on Remicade (didn't work) and had moved on to Enbrel. That was after trying just NSAIDs and later, SSZ. Don't give up.

Jeffery, most doctors are jerks and don't seem to want to work for a living just sit in their office and collect money. KEEP GOING AND FIND A GOOD ONE, you will. I think most of us have been through what you are. Everyone has different symptoms with this stinking disease, I am not HLA-B27 but do have AS. I know there isn't an abundance of rheumys out there but keep trying because I pretty sure that a pain management doc won't give you a TNF or nsaids.

Tom

Pain management doctor can give NSAIDs - heck, one can buy many of those over the counter, nnot all, but many. But, will not be able to prescribe anti-TNFs. At about $1500 a bang... Rheumies and specialists dept.

Take care Jeffery -

I second what Janet says that's how they found mine in my SI's I couldn't walk and had been in the hospital a week at the end of my rope I know about the depression too...I hope you find someone to help you
Lisa