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Can someone have ankylosing spondylitis symptoms but NOT be AS?


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Old 01-26-2018, 12:26 PM   #1
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Can someone have ankylosing spondylitis symptoms but NOT be AS?

Can someone have ankylosing spondylitis symptoms but NOT be AS?

Hello everyone!

Thank you for reviewing my post. I know that diagnosis cannot be made by simply listing symptoms... which is why I was examined by my doctor this past week and am awaiting results of my blood test.

But the wait is killing me. And I’d like some answers/guidance.

Here’s my story: 2 months ago I awoke with lower back pain. It lingered during the day. It was localized in my lower back. Since then I’ve had some degree of back pain in the morning. Ranging from a 1 to a 10 in pain.

Some nights it even wakes me up as early as 5am, and others at 6am. I go to bed around 12midnight.

Other symptoms that have emerged is an intense anxiety. Idk what’s that about but it’s random.

Three nights ago was the worse. I woke up with the worst back pain. Lasted through the day. It’s scary cause it usually goes away as the day goes on but not 3 days ago.

Anyway, I explained all this to the doctor and am awaiting results BUT...

No one in my family has ankylosing spondylitis. Arthritis, yes but no AS. Can it still be AS?

I neglected to tell my doctor that when it first happened I was pushing myself in regards to weights. I’m a little guy and was curling 45lbs in each hand. But they’re on the floor so I must bend down to get them and I think I might have strained my back. Could a strain or muscle injury mimic textbook ankylosing spondylitis symptoms?

Thank you for taking the time to read my post and share your insight. I value it.

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Old 01-29-2018, 03:37 AM   #2
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Welcome to the board. It would be helpful if you could be more specific about the back pain...like where specifically is it located? What type of pain is it...continual, aching, jabbing, like an electrical current, etc.? Did it come on gradually or suddenly? What makes it feel better or worse? Time of day when it is better or worse?

What other symptoms do you have? Is there any pain running down a leg? Elsewhere?

 
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Old 01-29-2018, 09:26 AM   #3
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

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Originally Posted by teteri66 View Post
Welcome to the board. It would be helpful if you could be more specific about the back pain...like where specifically is it located? What type of pain is it...continual, aching, jabbing, like an electrical current, etc.? Did it come on gradually or suddenly? What makes it feel better or worse? Time of day when it is better or worse?

What other symptoms do you have? Is there any pain running down a leg? Elsewhere?
OMG! Thank you soooo much for taking time to respond.

The back pain is in the lower back, like a little above the tailbone. It’s strongest during sleep. It wakes me up around 5am and 6am. Dull aching pain. Stiffness as well sometimes. Waking up makes go away. This pain came on ALL OF A SUDDEN one night while sleeping. Work was very stressful around that time 2 months ago. I work sitting down in an office.

Sometimes some movements might make me feel discomfort during the day but I’ve yet to establish a pattern.

I’ve experienced some pains in my fingers and toes, and some slight eye pain. THAT’S why I’m so afraid. As for pain shooting down the leg... I think I experienced it once yesterday. Fair warning, I have been in full blown FREAK OUT mode since all this began so I may be more sensitive to pain.

So far it’s lasted more than 2 months but not quite 3 months yet. It came on strong then subsided for a bit and then last week came back stronger.

One day during the past two months I did have a red yet but only lasted a day.

A new symptom this week is chest pain. Tomorrow I have an echocardiogram but neurologist appointment isn’t until JUNE!!!!

Once again, thank you so much for responding. I feel so alone and afraid, and truly appreciate your insight.

 
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Old 01-29-2018, 10:47 AM   #4
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Why AS and not injury, strain, etc unless the doc has done blood testing to see if you have it?
Absolutely, muscle pressing on a nerve can cause pain...as well as holding heavy weights and that causing compression in a weak area of your back.

My sister has it, my dad had it...I've had back pain since a kid (I'm 63 now), exactly as you describe, but don't have AS. I do have scoliosis (mild), lordosis (mild), structural changes, and osteo. Other autoimmune disease, however.

What are all the tests you had done exactly?
Let us know the outcome of the results.

q
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Last edited by quincy; 01-29-2018 at 10:52 AM.

 
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Old 01-29-2018, 10:58 AM   #5
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Quote:
Originally Posted by quincy View Post
Why AS and not injury, strain, etc unless the doc has done blood testing to see if you have it?
Absolutely, muscle pressing on a nerve can cause pain...as well as holding heavy weights and that causing compression in a weak area of your back.

My sister has it, my dad had it...I've had back pain since a kid (I'm 63 now), exactly as you describe, but don't have AS. I do have scoliosis (mild), lordosis (mild), structural changes, and osteo. Other autoimmune disease, however.

What are all the tests you had done exactly?
Let us know the outcome of the results.

q
Thanks for posting.

AS seems to be the first thing that pops up and goes with “pain that wakes you up.”

I’ve also experienced some joint pains in my fingers, and toes. Like quick shooting pains.

And eye has hurt on occasion, and one time it was red for a good portion of a day. Had a stye another day too.

And during my 2011 colonoscopy they found a little Proctitis. But nothing ever came of it. They never gave me anything to treat it or anything.

Thank you for responding to my post.

 
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Old 01-30-2018, 07:03 AM   #6
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

It is important to get your symptoms checked out. Have you seen a rheumatologist? That specialist should be able to rule in or out whether you have AS.

I do know that no ONE person's experience with pain is the same. Obviously different "ailments" cause different pain symptoms, but each individual experiences pain differently. Also, there is a subjective element to it and, depending on what else is going on in the person's life, it can make that pain more or less intense. There is a reason why something that is merely nagging during the day seems to intensify when lying in bed, trying to sleep.

I sense you are very worried and anxious about what is going on and it sounds like you are now doing what I call "taking inventory." By that I mean you are asking yourself "how does this feel right now" all the time, about every part of your body.

I've had spine issues since 2000 and have had four lumbar spine surgeries since 2008. There were times when my reaction to pain was really spiraling. It is important to step back and recognize the fact that pain doesn't kill you.

Sometimes it is helpful to use some techniques to help you manage your anxiety and pain. There are some guided imagery CDs that might help you learn to better handle what's going on and help you to relax a bit.

I know from experience that some relatively minor muscular strains can cause symptoms that are very painful...and that can take a LONG time to heal. Try not to jump to conclusions.

 
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Old 01-30-2018, 07:51 AM   #7
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Hello! And as always, thank you for taking the time to respond. I have an update!

Woke up again at 5:30am, and that’s the norm according to my FitBit app/watch. But that’s not the update... the doctor’s office called and said that I have: High Cholestrol, and Vitamin D Deficiency.

I asked the tech on the phone, “So wait, I’ve been freaking out about back pain, bone aches and pains and some eye pain, and it’s all quite possibly due to Vitamin D Deficiency!!?” She said, “No, because it’s not that bad. And I have it bad and it doesn’t give me anything like that.” But Dr. Google says it’s possible. Haven’t found anything about back pain that WAKES you up at night with Vitamin D Def but lower back pain IS a symptom of it... at least according to the internet.

I also noticed my doc set me up with a Neuro and not a Rheum.... so perhaps she’s thinking an injury or herniated disc? Idk.

Last edited by Administrator; 01-30-2018 at 02:21 PM.

 
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Old 01-31-2018, 11:57 AM   #8
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

My back pain wakes me up at night. I dont have AS.

Low vitamin D can definitely cause issues with pain and other stuff....was it suggested for you to take a supplement? I take 4000 - 5000 IU daily.

A neurologist would know about AS and would hopefully look into it. In truth, AS is not the only reason for the type of pain you have, even if it does follow a pattern. As well, hopefully the neuro will do x-rays or CT or whatever to determine a cause.

Please be honest in that you lift weights at that appointment. Are you continuing lifting through this issue?
q
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Last edited by quincy; 01-31-2018 at 11:59 AM.

 
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Old 02-06-2018, 09:40 AM   #9
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Quote:
Originally Posted by quincy View Post
My back pain wakes me up at night. I dont have AS.

Low vitamin D can definitely cause issues with pain and other stuff....was it suggested for you to take a supplement? I take 4000 - 5000 IU daily.

A neurologist would know about AS and would hopefully look into it. In truth, AS is not the only reason for the type of pain you have, even if it does follow a pattern. As well, hopefully the neuro will do x-rays or CT or whatever to determine a cause.

Please be honest in that you lift weights at that appointment. Are you continuing lifting through this issue?
q
Alright. I have some more information.

X-Ray found nothing.
Blood work:
Lipase = 91
C Reactive Prot = 1.8 H
IGA, Serum = 356(a)
tTG AB IGG = 1(b)
Gliadin DGP-IGA = 8(A)
Gliadin DGP-IGG = 4(B)
tTG AB IGA = 1

I have no idea what this stuff means.

Still waking up at 5:30am, but now I have some abdominal pain and cramps and feel like going to the rest room but then don’t. As well as lower rib pain.

Colonoscopy scheduled for March 6th.

Physical therapy exercises make me feel a bit better, particularly the ones where I lay down and push just my upper body up while leaving my hips glued to the bed.

Any idea what these numbers mean, though?

 
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Old 02-06-2018, 10:09 AM   #10
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Seems that you're being checked for celiac. Lipase level is usually related to pancreas...yours is normal.

CRP levels check for inflammation in the body. Normal is 1....yours is 1.8. But levels vary with labs.....your test results should show the range as well.

Regarding proctitis previously...did you have biopsies done?

Are you having issues with bms, as rectal pain when trying to go?

q
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Last edited by quincy; 02-06-2018 at 10:26 AM.

 
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Old 02-06-2018, 10:25 AM   #11
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Quote:
Originally Posted by quincy View Post
Seems that you're being checked for celiac. Lipase level is usually related to pancreas...yours is normal.


Regarding proctitis previously...did you have biopsies done?

Are you having issues with bms, as rectal pain when trying to go?

q
Thanks for replying!

Yeah, they did. Found “mild non-specific chronic inflammation” that was near the terminal ilium. Medium-sized internal hemmoroids. And that was it. That was June 2011.

They also performed an endoscopy and found what looked like the “beginnings of an ulcer” as per my recent doctor who looked over those records.

From my research, my numbers are normal in regards to celiac? I think.

Only 2 that worry me are C Reactive at 1.8 and IGA at 356. For those with inflammation, what would C Reactive numbers look like?

My only GI issues lately seem to be tenesmus and abdominal pain. These new symptoms have started around 2-3 weeks ago.

No noticeable blood or mucus in stool... but just yesterday I gave a stool sample and am awaiting that.

I sure hope ALL this crap(no pun intended) is due to something like IBS or anxiety.

 
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Old 02-06-2018, 11:07 AM   #12
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Annnnd... just got a call from my GI’s office and said that one of the “inflammatory markers” came back a little high and that that one is the “C Reactive.”

So they’ll be taking biopsies during my Colonoscopy.

I’m just confused cause online it says, 1.0-3.0 is average.

 
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Old 02-08-2018, 09:31 AM   #13
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Hi...regarding the scope, I hope biopsies were done throughout your colon and terminal ileum, as well as in the esophagus and stomach and tested for h. Pylori considering you had an ulcer.

There is no inflammation with IBS, and I would suspect Crohn's or ulcerative Colitis (if the inflammation was in the cecum and not in terminal ileum).
Now....with CD (which can affect gastro tract anywhere from mouth to anus...including stomach), there are definitely extraintestinal issues associated, and back pain when flaring is definitely one. AS is associated as is IBD-associated joint inflammation.

I'm extremely surprised that you were left untreated since your last c-scope. At the very least you should have been put on mesalamine oral and rectal.

Let us know the outcome. I suggest you get a copy of all your test/biopsies results.

q
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Old 02-08-2018, 09:53 AM   #14
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

The final Dx was: “Terminal ileum - Superficial fragments of small bowel mucosa with mild non-specific chronic inflammation in lamina propria. The architecture of the villi appears normal. No evidence of Whipple’d disease(PAS strain), celiac sprue, or Giardia. Colon biopsy - cecum: Fragment of colonic mucosa with mild non-specific chronic inflammation in lamina propria and lymphoid nodules.”

My GI has moved up the date of my colonoscopy to this Tuesday.

 
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Old 02-08-2018, 10:52 PM   #15
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Re: Can someone have ankylosing spondylitis symptoms but NOT be AS?

Good to hear you will be having the c-scope soon. Please ask the doc to take biopsies throughout your colon since you have chronic inflammation at TI and in the rectum as per last scope.

q

 
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