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Let's try again #279154
10/03/17 02:00 AM
10/03/17 02:00 AM
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Jlove621 Offline OP
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Jlove621  Offline OP
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For some reason my first post showed nothing so I'm going to try again. I just got my blood tests back and they are negative. I'm curious if given my symptoms you think I should request an MRI or X-ray or both. I'm currently 35.
Since I was a teenager I have had issues with my lower back. I think it was more mechanical back then, but I can't remember what made it wors or better. The last couple of years it has become more of a deep ache in my tailbone vs just low back. It's usually worse at night. It does make it hard to go to sleep when it's aching. I usually have to take something to help me go to sleep. If it does wake me up (which isn't often) I struggle to go back to sleep because I'm so uncomfortable. It typically does not hurt in the morning. I have noticed it's worse the days leading up to and the first couple days of my period but my OBGYN had ruled out any issues there.
My upper back hurts ALL the time. It has since I had my son beginning of 2013. I pop it almost daily. I have not found anything that helps
I have had migraines since I was in high school. The decreased when I had kids but I get them a couple times a year. I typically have a headache about 75% of the time.
I was diagnosed with plantar faciattis in 2015 in both feet. And possibly tarsal tunnel in my right foot. My right ankle pops nightly and the last year or so it started to hurt when it does pop. About 3 months ago the ball of my feet started to hurt and the doctor thinks it's some immflamation in the nerves between my toes. Oh and I have a bunion which never bothered me until one podiatrist was messing with my big toe now my big toe aches all the time.
A month after my feet started hurting I started having episodes if vertigo. I saw a neurologist who thought it was migraines. I did get an MRI that was fairly normal.
A month after that I had miserable pain in my right eye. The doctor thought it was either a migraine or optical Nervitis. She put me on a ateroid and it got better.
I have had issues with GERD for years and since my son in 2013 have alternating constipation and diarrhea.
I have also had issues with anemia. That has been resolved I believe.
I have seen 3 podiatrists, a neurologist, a hematologist, and a spine specialist in the last 2 years and they have all basically told me there is no connection between my issues. I just saw a holistic doctor to help me reduce immflamation in my body and she was concerned about it being AS.

Just wondering for those who are living with AS are theses typically some of your symptoms? Other than the blood test how were you diagnosed ?

Thank you

Re: Let's try again [Re: Jlove621] #279155
10/03/17 02:51 AM
10/03/17 02:51 AM
Joined: Jun 2017
Posts: 160
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Thesnakejakw Offline
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Posts: 160
Originally Posted By: Jlove621
For some reason my first post showed nothing so I'm going to try again. I just got my blood tests back and they are negative. I'm curious if given my symptoms you think I should request an MRI or X-ray or both. I'm currently 35.
Since I was a teenager I have had issues with my lower back. I think it was more mechanical back then, but I can't remember what made it wors or better. The last couple of years it has become more of a deep ache in my tailbone vs just low back. It's usually worse at night. It does make it hard to go to sleep when it's aching. I usually have to take something to help me go to sleep. If it does wake me up (which isn't often) I struggle to go back to sleep because I'm so uncomfortable. It typically does not hurt in the morning. I have noticed it's worse the days leading up to and the first couple days of my period but my OBGYN had ruled out any issues there.
My upper back hurts ALL the time. It has since I had my son beginning of 2013. I pop it almost daily. I have not found anything that helps
I have had migraines since I was in high school. The decreased when I had kids but I get them a couple times a year. I typically have a headache about 75% of the time.
I was diagnosed with plantar faciattis in 2015 in both feet. And possibly tarsal tunnel in my right foot. My right ankle pops nightly and the last year or so it started to hurt when it does pop. About 3 months ago the ball of my feet started to hurt and the doctor thinks it's some immflamation in the nerves between my toes. Oh and I have a bunion which never bothered me until one podiatrist was messing with my big toe now my big toe aches all the time.
A month after my feet started hurting I started having episodes if vertigo. I saw a neurologist who thought it was migraines. I did get an MRI that was fairly normal.
A month after that I had miserable pain in my right eye. The doctor thought it was either a migraine or optical Nervitis. She put me on a ateroid and it got better.
I have had issues with GERD for years and since my son in 2013 have alternating constipation and diarrhea.
I have also had issues with anemia. That has been resolved I believe.
I have seen 3 podiatrists, a neurologist, a hematologist, and a spine specialist in the last 2 years and they have all basically told me there is no connection between my issues. I just saw a holistic doctor to help me reduce immflamation in my body and she was concerned about it being AS.

Just wondering for those who are living with AS are theses typically some of your symptoms? Other than the blood test how were you diagnosed ?

Thank you
x-ray showed signs of arthritis my possible as I was referred to a rhem doctor who did a exam and measurements proved my diagnostic. Ask for a xray and or a MRI insist that something might be wrong


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
Re: Let's try again [Re: Jlove621] #279158
10/03/17 12:07 PM
10/03/17 12:07 PM
Joined: Jun 2016
Posts: 339
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Winston Offline
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Was the spine specialist you saw a rheumatologist? If not, you need to see one. Rheumatologists are really the only doctors qualified to diagnose AS.

Re: Let's try again [Re: Winston] #279159
10/03/17 12:50 PM
10/03/17 12:50 PM
Joined: Sep 2017
Posts: 10
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Jlove621 Offline OP
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No he was an actual spine specialist. The only rheumatologist in our area, I used to work for and prefer not to see him. I will have to travel 2-3 hours to see one. I was hoping to avoid that if I could.

Re: Let's try again [Re: Jlove621] #279161
10/03/17 01:19 PM
10/03/17 01:19 PM
Joined: Jun 2017
Posts: 160
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Thesnakejakw Offline
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Originally Posted By: Jlove621
No he was an actual spine specialist. The only rheumatologist in our area, I used to work for and prefer not to see him. I will have to travel 2-3 hours to see one. I was hoping to avoid that if I could.
. Only way is to see a rhem that specializes in arthritis ect


Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed
Re: Let's try again [Re: Jlove621] #279164
10/03/17 02:38 PM
10/03/17 02:38 PM
Joined: Jun 2016
Posts: 339
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Winston Offline
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Winston  Offline
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You can't avoid a rheumatologist. AS is rare enough that most GPs won't have the knowledge base or comfort level to diagnose it. GPs also usually aren't comfortable prescribing biologics, which is the gold standard treatment for the disease today. Make a rheumy appointment right away because, if you do have AS or a related disease, the earlier you start treatment, the better your prognosis.

It also wouldn't be a bad idea, if you haven't done so already, to see your GP to discuss your GI issues and for bloodwork, including an autoimmune panel and the test for the HLA-B27 gene. Having those results will be helpful during your first rheumatologist appointment. Given your GI issues, it might be necessary to rule out IBD as the primary cause of your symptoms; arthritis, particularly axial arthritis, can be secondary to IBD. So seeing a gastroenterologist wouldn't be crazy, but I'd start with a GP.

Re: Let's try again [Re: Winston] #279165
10/03/17 03:16 PM
10/03/17 03:16 PM
Joined: Sep 2017
Posts: 10
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Jlove621 Offline OP
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Jlove621  Offline OP
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Thank you,

I did have the HLA-B27 test and it was negative. My GP's office called and left a message last night saying they wanted to do some more blood tests but didn't say what. I'm supposed to go have those done this morning. I guess I will see what that is and go from there.

Re: Let's try again [Re: Jlove621] #279171
10/03/17 07:15 PM
10/03/17 07:15 PM
Joined: Mar 2013
Posts: 1,921
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SouthernMoss Offline
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Originally Posted By: Jlove621
No he was an actual spine specialist. The only rheumatologist in our area, I used to work for and prefer not to see him. I will have to travel 2-3 hours to see one. I was hoping to avoid that if I could.


My rheumy is 2 hours away (one way), and I would drive twice as far if I had to. I see her 4 times a year. Yes, I have to take PTO to travel to her office. But if I weren't under her care, I would probably be taking at least that much PTO for pain and fatigue days.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic
Re: Let's try again [Re: Jlove621] #279248
10/09/17 09:08 PM
10/09/17 09:08 PM
Joined: Jul 2006
Posts: 6,558
New York
Banana Offline
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My rhuemy is 2 hours away and worth it, once treatment is started I only see her a couple times a year.

Yes, get the additional bloodwork. Some people have AS without that gene.

The spine doctor did not order x-rays or MRI?

Anna


Actema IV once a month (with pre loading for allergic reaction), Cymbalta x1 daily, Arava 20mg daily. Diagnosed with AS in 2004, suffered undiagnosed since 1982.
Re: Let's try again [Re: Banana] #279249
10/09/17 10:28 PM
10/09/17 10:28 PM
Joined: Sep 2017
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Jlove621 Offline OP
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Jlove621  Offline OP
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No the spine doctor did not order any tests. When I fist went in with low back pain the urgent care took X-rays of my low back that showed the space where my disc's are is very small so the diagnosed bulging discs. My insurance wouldn't authorize an MRI without doing PT first. But the spine doctor was only going to look at the extent the discs were bulging. No talk about possible AS ever.

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