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Very possible AS asking for advice on visiting Dr #280722
07/09/18 03:52 PM
07/09/18 03:52 PM
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Oklahoma, USA
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Winnebago Offline OP
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My real name is Jay. I'm a 47yo male. I have been in a health freefall for over 10 years. Based on my own research and the fact I've never been tested, I have a strong suspicion that I have AS. My symptoms are below for those who wish to read further. If you want to know more of my story, please ask and I will post. Let's just say my chronic medical condition has destroyed my entire life and I have fallen through every crack in the system trying to get help.

I'd like to ask the advice of this sage community. I will be going to a new PCP who is a DO on July 25th. What should I ask my new doctor to try and prioritize testing for AS and treatment?

I know I need a rheumy but I need a PCP first. I also want a rheumy that knows something about AS. Being in central Oklahoma my choices are limited.

Please accept my thanks in advance for any advice given.

My symptoms

Severe lower back pain
Auto-fusion of spine joints (L5/S1 causing permanent nerve constraint)
Neck pain
Shoulder pain
Hunched-over posture veering to the left
Unsteady on feet
Frequent kidney stones
IBS-d inconsistent
Loss of some sensation in lower body particularly on left
Can’t sleep in a bed, must remain somewhat upright
Some trouble swallowing
Pain in toes and heels
Difficulty sleeping
Exhausted all the time
Physical movement feels like a struggle
Dry flaky skin around nose and mouth
Chest can feel tight at times
Blurred vision
Loss of range of motion in back and neck
TMJ
Teeth are brittle and coming apart
Sleep apnea
Anxiety
Severe depression
Feeling of being warm all the time
Hair loss
Cannot sit upright for long periods, must recline but not go flat
Sensitive to light
Degenerating or bulging discs
Brain fog, difficulty concentrating
Restless legs sensation
Sinus tachycardia
High blood pressure
Osteopenia (or full-on osteoporosis by now)
Buttock pain
Diminished appetite
Orthostatic hypotension
Pay the price of physical activity next day in severe pain

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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Winston Offline
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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?

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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Winnebago Offline OP
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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.
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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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 - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
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, Melatonin, Culturelle probiotic
Re: Very possible AS asking for advice on visiting Dr [Re: SouthernMoss] #280726
07/09/18 06:42 PM
07/09/18 06:42 PM
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Winnebago Offline OP
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My new PCP is a DO. I think she may be able to see and understand things a normal PCP doesn't. That's my hope anyway.

Seriously, I've been to the best neurosurgeons and spine specialists in Oklahoma. I get a great big "HHMMPPHH, that's weird!" No answers though. I'm 100% certain you are right on delayed diagnosis of 7-10 years. We're looking for a mechanical issue when it's most likely something else entirely.

I'm tired of screaming for help and finding none from the medical community. That's why I came here to ask for advice. A whole bunch of people have been through this. I must learn from them and use the information to try a new approach.

Thank you, SouthernMoss. I've seen your posts and you are very kind and informative. I appreciate you taking time just to chime in.

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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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.

Re: Very possible AS asking for advice on visiting Dr [Re: Winston] #280728
07/09/18 06:49 PM
07/09/18 06:49 PM
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Winnebago Offline OP
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Winston,

And THAT is why I asked this forum for advice! You have given me the most solid game plan I have had in years. I will follow this to the letter and post back what I learn.

BIG THANK YOU!

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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SouthernMoss Offline
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Winston is good that way. smile


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
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, Melatonin, Culturelle probiotic
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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Whidbey Island WA
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WhiteCell Offline
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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~
Re: Very possible AS asking for advice on visiting Dr [Re: Winnebago] #280733
07/10/18 03:43 PM
07/10/18 03:43 PM
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Reno/San Fernando LU PI
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Tacitus Offline
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Hello, Jay:

Yes: You checked most of the boxes for active advanced AS.
Would of course do the testing previously recommended, making certain they do not use the serological B27 method (Fc or ELISA is definitive, but a full HLA tissue work-up might be the most instructive as other MHC can be involved in AS).
SIJ X-ray imaging would be helpful, also.
The book "The IBS Low-Starch Diet," by Carol Sinclair has helped many with AS; she is HLA B27 positive, but people who are not have also benefited from her regimen.


Nota Bene: I am not a medical doctor, and my views do not represent the opinions of the SAA
AS Resources
My Long, Boring AS Story
Professor Alan Ebringer Diet and AS


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