Patient Comments: Ankylosing Spondylitis - Experience

Please describe your experience with ankylosing spondylitis.

Comment from: Beryl, 65-74 Female (Patient) Published: February 24

I am a 70 year old female and recently diagnosed with AS (ankylosing spondylitis). I had a minor fall 9 months ago when I slipped on some water in the supermarket. I"ve had pain and stiffness all over ever since, especially in bed at night so that I could hardly bear to move. The doctor put me on ibuprofen for a month, now I am on Mobic/meloxicam and feeling a lot better. I am trying to walk and exercise regularly. From the symptoms, I think my father and my great grandfather both had it. My 45 year old son has been tested, and thankfully he doesn"t have the gene.

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Comment from: CHANDRA, 35-44 Female (Caregiver) Published: February 26

My sister of age 38 years is suffering from ankylosing spondylitis. She has been operated by a very senior neurosurgeon in 2011 but she is still not well. We have taken opinions from many senior consultants but all have suggested to us that their treatment is over, she cannot be ok. She also has polio since childhood, from around 4 years of age, and now she is bedridden and helpless.

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Comment from: GR8Teammom, 45-54 Female (Patient) Published: October 08

I tested positive for HLA-B27 when I had sciatic pain after a long road trip. Then I started feeling bad when I was going through the last phase of menopause. I fell playing with my dog on the grass. My neurologist already had me in physical therapy for my herniated disks in my neck at C4/C5, C5/C6, C6/C7 to see if it would help decrease the amount of migraines I was having. I told the physical therapist and they checked my spine and it was out of alignment. My neurologist have several X-rays taken of my spine and sent me to a rheumatologist who ordered a MRI and confirmed the diagnosis of ankylosing spondylitis along with scoliosis.

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Comment from: Dave, 45-54 Male (Patient) Published: August 12

I was diagnosed in 2009 with A S. In 2007 I had performis syndrome. I have had back problems since my teen years I am now 54. I have had 3 heart attacks. I have ankylosing spondylitis, degenerative disc disease, cervical spine spondylosis, cervical degenerative disc disease lumber spine, lumbar radiculopathy, arthritis shoulder, arthritis arthritis knees bilateral arthritis hips, permanently dislocated right shoulder, post posthetis neuroga in my left foot . Had a wreck in 2009 right before I was diagnosed with A S broke my neck have 2 metal spiders in my neck with 8 screws holding my neck on. I am on Remicade every 6 weeks at $10000.00 a treatment.I take oxycotin, Norco, cymbalta, zanaflex, methylprednisone, gabapentin, nexium, and phenagrin. Still I have horrible pain. I still fight the good fight what else can you do I have a 5 year old grand daughter that I just adore so I am going to be around along time to watch over her up bringing. I now have bars and a chair in my shower a lift chair in my living room and a scooter to get around when I cant. Life is what you make of it even with all that's wrong their are something that are still right. I can still hold my grand daughter I can pet my cat love my mom. The pain is only understood by people who have A S I believe no one should ever now how bad the pain with AS.

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Comment from: mustangbabydoll, 45-54 Female (Patient) Published: June 05

I found out in December 2012 that I have ankylosing spondylitis. I started Humira 4 months ago and it helps. I'm trying to get my disability. I haven't been able to work since October 2012. I have had many days where I am not able to function. I cry because of the pain.

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Comment from: Worried Mum, 35-44 Female (Caregiver) Published: May 03

My son started to show symptoms of ankylosing spondylitis at around 20 years old. I noticed his neck and upper back stiffening and curving for many years. At 34 he was finally diagnosed with ankylosing spondylitis, but unfortunately much damage to his back has is permanent. The lesson we have learned is to get a correct diagnosis as early as possible. Then, doctors may have been able to reduce the damage. Be vigilant – he is now 38 and we are checking to see if his children might have it. Hopefully, they are clear, but if not, early diet and exercise will be beneficial.

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Patient Comments

Viewers share their comments

Ankylosing Spondylitis - Symptoms Question: The symptoms of ankylosing spondylitis can vary greatly from patient to patient. What were your symptoms at the onset of your disease?
Ankylosing Spondylitis - Treatments Question: What was the treatment for your ankylosing spondylitis?
Ankylosing Spondylitis - Severity and Progression Question: Do you or a relative have ankylosing spondylitis? Please share its progression, along with treatments.
Ankylosing Spondylitis - Diagnosis Question: What tests led to a diagnosis of ankylosing spondylitis?

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