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#278233 - 06/15/17 04:12 PM New for me
PSO1957 Offline
Registered Visitor

Registered: 06/15/17
Posts: 7
Awaiting scheduling of appt with new Rheumatologist in July. Everything is falling together for a diagnosis of AS. No one wants to commit to that, would rather Rheumatology "break the news to me"? I've had I think every confirmatory test, +HLD B27, 20x normal HS CRP, 84 year old maternal aunt just diagnosised with same last year. (Likely others in previous generation), and bridging syndesmophtes at 3 levels of L-spine on MRI in 2015 (no one mentioned to me), rolled shoulders, slight stooped posture and of course pain for >35 years. (but in all fairness, pain only really bad in the last couple of years) Don't know how confirmatory that can be! I will be getting a 2nd opinion if Rheumatologist says anything else! I think what has stumped them so far, is I'm female and I'm 59 years old. Any one with similar gender and later in life diagnosis?
What's everyone's experience with needing (and that is the imperative word) an up-to-date MRI? I will push back on that one. Have to be heavily sedated and intubated, because of claustrophobia and unable to lie flat on my back. And horrific time of it waking up...
will they push it to have an accurate starting point? Like unable to recommend treatment regime without it?
It's scary, this road I find myself on. But at least I'm on the road and not laying in the ditch somewhere...

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#278235 - 06/15/17 04:18 PM Re: New for me [Re: PSO1957]
PSO1957 Offline
Registered Visitor

Registered: 06/15/17
Posts: 7
Shoot, sorry. Is this right spot for this?

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#278236 - 06/15/17 04:36 PM Re: New for me [Re: PSO1957]
Thesnakejakw Online
Registered Visitor

Registered: 06/10/17
Posts: 142
This is the right spot I am rather young and very interested in how as remained undiagnosed for so long. Repeat xrays would be a good idea if you don't like MRIs . Good luck I am new to the disease and only 23 years old yet I have damage to my spine showing on initial x-rays !
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Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed

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#278239 - 06/15/17 05:14 PM Re: New for me [Re: Thesnakejakw]
PSO1957 Offline
Registered Visitor

Registered: 06/15/17
Posts: 7
Long, long story. Aren't all AS stories that way? Lol
Too long and convoluted to go into on this forum.
sorry you are saddled at such a young age! Live every day to its fullest is all I can say.

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#278249 - 06/16/17 04:03 AM Re: New for me [Re: PSO1957]
Thesnakejakw Online
Registered Visitor

Registered: 06/10/17
Posts: 142
well at least I did not have to suffer to long but I always had this severe discolored part on my lower back for about 7 years its like yellowish red sometimes doctors are unsure what it is but its where a lot of my pain starts off at
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Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed

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#278255 - 06/16/17 02:54 PM Re: New for me [Re: PSO1957]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1756
Loc: MS
I'm female and was diagnosed at age 53. I never pursued treatment until then. I never bothered going to a doctor earlier because I thought I was following in my mother's osteoarthritic footsteps, and there's not much you can do for OA. (I now believe she has undiagnosed spondy, but that a whole other topic.)

What tests are required for diagnosis depend on the individual doctor. I was diagnosed based on history alone - repeated bouts of iritis and scleritis, HLA-B27+, low back pain since late 20s, enthesitis pain in sternum and elbow, crunchy knees, I could go on. My diagnosis was the rather vague "unspecified inflammatory spondylopathy" for the first year or so. She changed it to AS around the time I started Humira. I've had a couple of pelvic x-rays along the way, but I've never had an MRI.

I hope you are able to get a diagnosis and a treatment plan that works for you. Keep us posted.
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Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#278260 - 06/16/17 04:39 PM Re: New for me [Re: PSO1957]
Banana Offline
Registered Visitor

Registered: 07/23/06
Posts: 6500
Loc: New York
I would push for diagnosis and treatment and not worry about MRI. I think it has been at least 12 years since I had one and I don't need it to tell me how I am feeling.

You might want to read up on treatments because now adays, early aggressive treatment is the standard treatment. Long time inflammation damages your organs not just the joints.

Good luck, Anna
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Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.

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#278277 - 06/19/17 03:42 PM Re: New for me [Re: PSO1957]
kitkat203 Offline
Registered Visitor

Registered: 07/14/14
Posts: 71
Loc: Coral Springs , Florida
I started with low back symptoms at the age of 53. Like others I didn't pay much attention to earlier symptoms as others said I assumed it was OA related. My mother always suffered from a bad back along with my grandmother. I now wonder if they had AS as well. unfortunately it took me close to 8 years and 4 Rheumatologists to get a diagnosis. I hope you fair better! don't give up!
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Diagnosed with AS November 2013,HLAb27-neg. Also diagnosed with Fibromyalga and CREST syndrome. Degenerative disease of the cervical spine.

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