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#504360 06/19/14 12:23 AM
Joined: Feb 2011
Posts: 1,968
Pea Offline OP
Captain_AS_Kicker
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Posts: 1,968
I am so totally confused! I went to see my new Rheumatologist for test results that she gave me six weeks earlier, labs and 17 x-rays. She said she saw no signs of A.S. and my ex-Rheumatologist said that I also, along with A.S. had Enteropathic arthritis. She said from what she see's I have age related Osteoarthritis and no A.S. I told her that I was confused because I had already been dx and had several Dr.s substantiate that dx for treatment. I have several M.R.I.s showing fusion but she is telling me the x-rays tell it all!!!!!!!!!


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Pea #504364 06/19/14 12:50 AM
Joined: Jan 2008
Posts: 21,346
Likes: 1
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
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heart hugss Pea, so sorry! hugss heart

I had a rheumy before my current one who tried to convince me all of my stuff was OA including the SI joint degeneration seen on CT. I have OA in my knees (probably caused by the years of untreated inflammation) so I know how that feels. It hurts when you use the knees. But the SI (as you know) isn't anything like that. It hurts when you don't use it. It hurts when you do use it. It hurts.

Oh, I so hope you have the option of finding another doctor!



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)
Pea #504376 06/19/14 07:36 AM
Joined: Jan 2010
Posts: 2,105
C
Major_AS_Kicker
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Major_AS_Kicker
C
Joined: Jan 2010
Posts: 2,105
Find a new rheumatologist. Yes, it might look like OA and age related degeneration, but with a history of 28 years of inflammatory arthritis doing its damage, of course its going to look like that. Xrays don't show "active" inflammation - they only show old damage. Ask for MRIs to be done if you want to see if there is any active inflammation, and ask why they aren't considering that the damage shown on xrays isn't secondary to your 28 years of (diagnosed) AS, rather than primary OA.

Pea #504377 06/19/14 11:58 AM
Joined: Jun 2014
Posts: 53
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Posts: 53
When my rheumatologist got the results of the MRI showing advanced AS he didn't want to know about it ,just said find an orthopaedic specialist that's a problem for him not me. Same deal several years back when I had bi-lateral frozen shoulders. He told me to find someone who does saline distension. I thought that was his job. Too well paid ,too comfortable...Money for nothing and kicks for free. I have a short list of doctors I really like and a very long list of doctors who will not see me or my money again.. Ron.

Pea #504562 06/24/14 09:57 PM
Joined: Feb 2011
Posts: 1,968
Pea Offline OP
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I'm still going to the Mayo clinic in a week and a half and hopefully they can refer me to someone else locally.


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Pea #504576 06/25/14 02:51 AM
Joined: Aug 2012
Posts: 184
A
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
A
Joined: Aug 2012
Posts: 184
Some (probably most...) doctor's just don't know what they're talking about when it concerns AS. I'd just be on the hunt for another doctor.


Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.
ron50 #504619 06/26/14 01:44 AM
Joined: Oct 2008
Posts: 360
Fifth_Degree_AS_Kicker
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Fifth_Degree_AS_Kicker
Joined: Oct 2008
Posts: 360
Originally Posted By: ron50
When my rheumatologist got the results of the MRI showing advanced AS he didn't want to know about it ,just said find an orthopaedic specialist that's a problem for him not me. Same deal several years back when I had bi-lateral frozen shoulders. He told me to find someone who does saline distension. I thought that was his job. Too well paid ,too comfortable...Money for nothing and kicks for free. I have a short list of doctors I really like and a very long list of doctors who will not see me or my money again.. Ron.


Rofl. Sounds like he was real motivated to helping his patients. What a class act.

Pea #504628 06/26/14 01:47 PM
Joined: Nov 2008
Posts: 1,970
Captain_AS_Kicker
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Captain_AS_Kicker
Joined: Nov 2008
Posts: 1,970
Hope you find a good rheumy soon. Mine said AS is harder to control than RA. He is a GREAT rheumy.


I can not defeat you but I will not let you win

Jeff

Degenrative disc disease 2005
AS 2008 HLA-B27-
Fibromyalgia 2010
Disability 2012
Back to work part time 2013
Enbrel, Cymbalta,Oxycodone, blah blah blah blah
Pea #504652 06/28/14 02:03 PM
Joined: Mar 2002
Posts: 9,522
Likes: 2
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Joined: Mar 2002
Posts: 9,522
Likes: 2
There are good and bad rheumies... when I lived near Cleveland, Ohio I went to the Cleveland Clinic... it is one of the top hospitals in States and the Rheumy department was supposed to be excellent.

I encountered worst rheumy at the Cleveland Clinic... 1-2 months later I saw a new rheumy at small practice just outside of small town of Chardin, Ohio and was my favorite rheumy in all my years with AS.

Best to you

Tim


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

KONK - Keep ON Kicking
Pea #504692 06/30/14 01:00 PM
Joined: Nov 2001
Posts: 18,140
Likes: 4
Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Nov 2001
Posts: 18,140
Likes: 4
Pea, a good rheumy that understands AS can be so difficult to find. I was so lucky to find my rheumatology team when I was diagnosed. Then I had to move and the new rheumy tried to undiagnose me. Right down to MRI and re-doing my HLA-B27 test. Luckily, both came back positive.

Also luckily, I had my medical records to prove that I had been on biologics for five years, so there was cause to continue those (I'd have been screwed otherwise) but she never scheduled follow-ups and didn't even bother to do the basic screening done when a patient is on an anti-TNF. The only reason I was kept on her roster was that I kept up contact with her secretary.

18 months after my first visit, I finally had a follow-up ... with a different rheumy. Who booked me another appointment for six months later.

The rheumy who saw me that time had no explanation for the lack of response by the first new rheumy, but at least had the grace and courage to admit that I had been [*bleep*] over by that rheumy, and that it should never have happened.

I now have regular follow-up appointments and bloodwork done, as should have happened from the start. Persevere, Pea. Sometimes, we have to be our own best advocate. Even after diagnosis.

Love and warm hugs,


Kat

A life lived in fear is a life half lived.
"Strictly Ballroom"

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