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Do I have AS? #280298
05/07/18 10:27 PM
05/07/18 10:27 PM
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Kates Offline OP
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Hello all, just wondering whether I have AS. I've been waking up with a stiff back. My brother has AS so I have 20 % chance of getting it. I was tested 3 years ago and didn't have it.

Age 28 female
Hlab27 positive
Family history
No inflammation shown in blood test
Waking up stiff for a couple of months with sore lower back in lumber region. Stiffness / pain goes away in 30 mins of waking up and I'm fine sitting at a desk all day
Possibly injured back at gym

Thanks

Re: Do I have AS? [Re: Kates] #280299
05/08/18 12:30 AM
05/08/18 12:30 AM
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WhiteCell Offline
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You should make an appointment with your doctor imho.


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: Do I have AS? [Re: Kates] #280301
05/08/18 11:30 AM
05/08/18 11:30 AM
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Winston Online
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Maybe. You should see a rheumatologist. Your symptoms, HLA-B27+ status, and family history are highly suggestive of AS or a related disease. The lack of inflammatory markers in the blood does not mean you can rule out AS, as a large percentage of AS sufferers always have normal sed rate and CRP. Come back and let us know what the doctor says.

Re: Do I have AS? [Re: Kates] #280303
05/08/18 12:29 PM
05/08/18 12:29 PM
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Tacitus Online
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WELCOME, Kates:

There is no absolute test for AS and the blood tests for inflammation are certainly not reliable, especially in the early stages of AS. Physicians have relied upon "benign neglect," or allowing the disease to progress to the characteristic (permanent) SIJ fusion, before pronouncing their proper judgement of AS. Sometimes this takes many years. Short answer: NOT YET.

If a physician believed his or her patient had AS, could they help educate that patient in a way to PREVENT the permanent skeletal damage? I regret the answer today, but Henry Ford predicted that someday doctors would have this ability.

Early diagnosis is really only helpful if there is a viable treatment offered, otherwise starting certain drugs too early might do more damage than harm. If any drug were the solution in the first place, and although the right drug(s) can be very useful, in my own experience almost no physician knows what those "right" drugs are!

Diagnosed in 1978, I have learned the hard way that AS was the result of my lifestyle, and had I met one of Henry Ford's doctors, I might have fared much better: The diagnosis of Early ankylosing spondylitis (5), or even if suspected, could (theoretically) lead to a preventive treatment option.

Despite incorrect diet for AS, June Stein was able to overcome AS and prevent the damage through her adherence to yoga, but Carol Sinclair totally avoided the damage through her own diet. Too late to avoid the skeletal deformity, but I had to avoid eye damage due to repeated episodes of iritis and as many kidney stones (they are related), so I employed some methods described in my AS Resources link, especially fasting, which is the gateway to really understanding this disease.

HEALTH,
John


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

Re: Do I have AS? [Re: Kates] #280327
05/09/18 07:20 PM
05/09/18 07:20 PM
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SouthernMoss Offline
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Kates, you do have some of the symptoms. You should see a rheumatologist.


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, Culturelle probiotic, Melatonin (as needed)
Re: Do I have AS? [Re: Kates] #280330
05/10/18 12:32 PM
05/10/18 12:32 PM
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Kates Offline OP
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Thanks everyone for your input. GP thinks I don't have it due to no inflammation in blood however has referred me to a Rheumatologist anyway. Guessing the Rheumatologist will get me to do another MRI / x-rays. Shame it's not more straightforward to diagnose.

Re: Do I have AS? [Re: Kates] #280331
05/10/18 12:37 PM
05/10/18 12:37 PM
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Kates Offline OP
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Will update you all when I find out ... smile

Re: Do I have AS? [Re: Kates] #280332
05/10/18 12:49 PM
05/10/18 12:49 PM
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Winston Online
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Hopefully your GP is correct, but do push back when a doctor says "no inflammation in blood" means you don't have it. Up to half of all AS sufferers never have elevated sed rate or CRP. Your rheumatologist should know this. If he/she doesn't seem to, find another rheumatologist.

Re: Do I have AS? [Re: Kates] #280333
05/10/18 12:50 PM
05/10/18 12:50 PM
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Kates Offline OP
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2 nights ago I woke up with no pain for the first time in a couple of months. But since then I've been waking with pain across my bum/ hips area which is worrying as I've been told AS often starts there. But I guess it could be anything ...


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