Re: Very possible AS asking for advice on visiting Dr
[Re: Winnebago]
#280723
07/09/18 05:31 PM
07/09/18 05:31 PM
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Joined: Jun 2016
Posts: 467
Winston
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There is no one test for AS. The HLA-B27 genetic test is a clue but is not dispositive. Elevated inflammatory markers in the blood (sed rate and CRP) are also clues but are not dispositive (nor is the absence of elevated inflammatory markers dispositive). The diagnosis is made on the basis of clinical symptoms, age at onset of symptoms, family history, and radiographic evidence, if any. I doubt a PCP would make the diagnosis. He/she would refer you to a rheumatologist if AS is suspected. So I guess your goal for this appointment is just to get that referral? A positive HLA-B27 genetic test, standing alone, should get you that, but it does not mean you have AS.
You have a very long list of symptoms, some of which are associated with AS and others which are not. Some of them are also so medically-specific that it makes me think you have seen doctors of some sort over the past ten years for these symptoms. So what makes you think AS? Is there a family history? Have other possible causes of your symptoms been ruled out by doctors, e.g., other autoimmune diseases?
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Re: Very possible AS asking for advice on visiting Dr
[Re: Winston]
#280724
07/09/18 06:01 PM
07/09/18 06:01 PM
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Joined: Jul 2018
Posts: 5 Oklahoma, USA
Winnebago
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OP
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Oklahoma, USA
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My back began fusing and collapsing on its own. It causes a lot of pain. I have pretty good diagnostic x-ray/MRI and other documentation showing the progression of the issues. I honestly suspect I have had this for years but it didn't become acute until my late 30s. My mother has multiple back and bone issues but has not been diagnosed with AS specifically. My father has had a knee replacement from arthritis. Bone and back issues definitely run in the family.
The symptoms list is more of a diary than anything. I know some are more indicative of AS than others. Nothing has been ruled out by any of the many doctors I have seen. I've been to a lot of doctors and there has been a lot of head-scratching. Nobody understands why this is happening but I have not had any testing for any autoimmune diseases or even seen a rheumatologist.
I desperately want there to be an answer but I'm trying not to shop or steer for one. I know there may never be one but I continue to deteriorate to the point I am almost non-functional. I can barely work and getting around is difficult at best. Just going to Wal-Mart is a chore and I pay the price for it later.
Thank you for your thoughtful response, Winston.
Last edited by Winnebago; 07/09/18 06:07 PM.
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Re: Very possible AS asking for advice on visiting Dr
[Re: Winnebago]
#280725
07/09/18 06:35 PM
07/09/18 06:35 PM
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Joined: Mar 2013
Posts: 2,094 MS
SouthernMoss
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I can't believe that none of the many doctors you have seen ever suggested that you see a rheumatologist. It takes the average AS patient 7-10 years to be diagnosed, and in my opinion part of the reason is that so many patients do not see a rheumatologist until years into their journey.
As Winston said, a PCP is not going to make an AS diagnosis. But with your spinal issues there should be no problem in getting a referral.
I hope you are able to find answers soon. Keep us posted.
Ginny - 58 year old female Dx with USpA in March 2013; changed to AS in July 2015 Iritis and Scleritis, both currently in remission unicompartmental knee replacements: right-June 2014, left-Aug 2018 MTX, Humira, Cyclobenzaprine, plus Celebrex as needed Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
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Re: Very possible AS asking for advice on visiting Dr
[Re: Winnebago]
#280727
07/09/18 06:47 PM
07/09/18 06:47 PM
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Joined: Jun 2016
Posts: 467
Winston
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Okay, having that information, I would present your new PCP with an outline of what has happened to you over the past 10 years, including the doctors you've seen and what they concluded (if anything). Do it in chronological order. I would bring copies of any imaging and medical records that you have to the appointment. I would ask for bloodwork, specifically an autoimmune panel, CRP, ESR, and the HLA-B27 genetic test, and I would ask for a referral to a rheumatologist who is familiar with AS and related diseases. You may have to travel to an academic medical center to find that person. There's a rheumy at OU in Oklahoma City, Dr. Priya Prakash, who claims to have expertise in AS. Good luck.
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Re: Very possible AS asking for advice on visiting Dr
[Re: Winnebago]
#280729
07/09/18 07:50 PM
07/09/18 07:50 PM
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Joined: Mar 2013
Posts: 2,094 MS
SouthernMoss
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Winston is good that way. 
Ginny - 58 year old female Dx with USpA in March 2013; changed to AS in July 2015 Iritis and Scleritis, both currently in remission unicompartmental knee replacements: right-June 2014, left-Aug 2018 MTX, Humira, Cyclobenzaprine, plus Celebrex as needed Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
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Re: Very possible AS asking for advice on visiting Dr
[Re: Winnebago]
#280730
07/10/18 01:53 AM
07/10/18 01:53 AM
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Joined: May 2010
Posts: 1,489 Whidbey Island WA
WhiteCell
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I waited with symptoms and signs for 30 years until I saw a Rheumatologist and was diagnosed.
It's common.
Starting at 18 yrs old > Reiter's Syndrome. Diagnosed 2001 Ank Spon. Started Remicade 2002 - 5mg/kg every 7 weeks.
Right Eye Glaucoma- Trabeculectomy/lens replacement 2006. Right eye DSEK Cornea Transplant 2009. Right eye Ahmed Shunt 2016. Right eye DSEK Cornea Transplant 2016. Supra Ventricular Tachycardia. 2004. Cured by RF ablation 2008.
ICU RN - Seattle, WA
~Grasp The Challenge and Succeed~
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