Hi, I just joined this site last week. I have a question about something a rheumatologist told me years ago. I've asked several doctors, but they had never heard of it. I'm hoping someone in this community knows. The rheumatologist who diagnosed me with AS and ran the genetic testing for HLA-B27 told me that since I am negative for the HLA-B27 my spine will not fuse. Anyone heard of this? My symptoms began at age 7, I'm 51 today. My last X-rays in 2010 showed that I still have no fusion in my spine. I'd also like to add that the same doctor told me that because I don't have that genetic marker, my AS cannot be genetic. A couple of years later my father was diagnosed with AS. I've taken her input sceptically. I am scared that someday, any day now, I will have noticeable deformities. I don't want to look like the Hunchback of Norte Dame! I prefer to hide my disease! I spend large chunks of time in bed and have brief stints of activity. It occurred to me that what I'm doing can cause the bent back. I sleep in a twisted position or in a fetal position. The more pain I'm in the closer my knees get to my chin. I frequently have crippling pain. How does anyone with AS maintain good posture while in severe pain? And has anyone else heard a correlation between HLA-B27 and fusion?
ankylosing apondylitis spine fusion - Pain Concern
There are several points here.
HLA B27 status doesn't necessarily mean you will either have mild disease or you won't fuse. Some people do both.
False negative HLA B27 tests are really quite common as there are several different tests available and some are less reliable than others. So it is possible that you would be positive if you get tested with a more reliable test, in which case it could be genetic.
HLA B27 isn't the only gene that appears to be involved in AS (its just the most well known, and most common one, and the only one that is currently regularly tested for), so it may be that your family does carry one of the other genes.
Spending too much time in bed unfortunately is one of the worst things you can do to maintain flexibility and posture and avoid deformity. You really do need to be doing a daily programme of gentle stretching, and to keep yourself moving with low impact activity. Best thing to do would be join one of the ankylosing spondylitis societies (Spondylitis Association of America, in the US, or National Ankylosing Spondylitis Society in the UK) - they both have a lot of information available about how to manage life with AS, including exercise programmes.
If you aren't currently taking regular antiinflammatory treatment or under the care of a good rheumatologist who understands AS, then you really do need to be - keeping the disease under control is important, alongside keeping yourself moving. Good disease control will make it easier to move and keep good posture, but actually just pushing a bit more to move through the stiffness in the morning will make it easier to move the rest of the day. I know what its like waking up feeling like it is impossible to move, but I also know that once I have got through that first hour or so of forcing myself to move, and have done my first lot of gentle stretching, then the rest of the day definitely does become easier.
My son has just been diagnosed with AS, and also has the HLA B27 gene he also has spondylitis, I have been in and out of hospital 6 times with my back , acute on chronic pain, IV had a number of procedures, nerve blocks steroid injections , cordial injections , the medication i am on is terrifying, just wondering if I should get tested for AS , or would this have shown up earlier, cheers Terri
It sounds like a good idea. There is strong evidence to support AS being genetic. Let your GP know about your son and ask to have testing done.
I was diagnosed in my early thirties after having symptoms since childhood. About 10 years after my diagnosis, my dad had X-rays for a work injury. They found years of AS activity and fusion.
I wouldn't ask to be tested for HLA B27 because if you don't happen to have it, you probably won't get any further with investigation (and it isn't necessary to have it to get a diagnosis). I'd ask for a referral to rheumatology on the basis that you have a long history of back pain and your son has AS. If you check out the National Ankylosing Spondylitis Society webpage and the information about getting your diagnosis, if you have any more of the signs of inflammatory back pain, mention those too.
I have been in hospital, 6 times this year with nerve blocks coral injections , I can't count the number of steroid injections I have had , the last procedure I had 8 steroid injections coral freeze and 2 freeze blocks , and I'm still in pain . I do hospital physio, and always come out in more pain than when I went in , I do water therapy, I'm just over it all. I just need a diagnosis, I was wondering wouldn't have they already have tested me for AS before now though , even though they don't know my son got it, IV had so many MRIS X- rays , wouldn't they have picked it up .Any information, will help, I'm desperate, this all can't be to do with DDD, disc bulge , pinched nerve, can it ? Please help Terri
I'm so sorry to hear of your difficulties.
There really isn't a "test" to show AS. Diagnosis usually comes from imaging and consulting a rheumatologist. Although lower back and neck pain are expected, AS can show varying symptoms from one person to the next.
I hope exchanges with others on this site will be helpful for you. With AS or not, perhaps other treatments will be helpful for you.
There isn't a specific treatment for AS. There are several common approaches. I have experimented with many things. What works for one person doesn't necessarily work for another.
I have been enjoying reading on this site what others are doing. I'm learning new approaches. It is giving me hope. Discovering new treatments brings me hope for improvement.
I'm not sure this is helpful for you...
Thank you for responding. Yes, exercise has been helpful. I started gentle yoga last year. Exercise in the pool has worked great as I can move more and get a better workout with less strain on my joints.
Summers in New England are brutal for me. Each year AS makes me bedridden with severe, crippling pain and many days I am unable to walk. I try to take advantage of the cooler months to keep up my fitness levels.
Recently I spotted an older woman in my community with severe fusion effects- with a strong curve forward, a "hump", and her neck so fused she cannot move it and can only see the floor. I became very frightened that could be me when I reach her age. When the worst of the summer's flares came I was very worried.
I have had AS symptoms since childhood and have taken NSAIDs for over 30 years. My digestive system continues to worsen. I am considering trying Methotrexate or Biologics. I am concerned about further weakening my immune system. It is hopeful to hear others successes.
Thank you for your support.
I believe there might be a B12 deficiency link to ankylosing apondylitis, not saying this is what you have, but might be an idea to check it out yourself CtKUSA.
Spine degeneration can be down to vitamin B12 deficiency.
Can you give any medical research references for that B12 theory? Its not something I have ever heard of, though you can have B12 deficiencies if you have associated autoimmune disorders that cause malabsorption problems (like coeliac disease or inflammatory bowel diseases)
As I said there 'might' be a link, nothing to do with medical research.
Bones, spine degeneration, how you walk muscle strength, brain etc are 'linked' to B12 Deficiency.
Also being in a fetal position 'can' be down to B12D (personal experience) and also of Dr David carr whose B12 Def. was missed, by many Doctors, (though not saying this is the same as CTKathleenUSAs's.)
I only wished I'd known about vitamin deficiencies and healing powers of them, back then. I thought vitamins were just sweeties that didn't do much.
Take a look on you tube -how to remedyAnkylosing Spondylitis with 90 for Life Minerals from Doctor Wallach and Youngevity. He talks only about B12 on this video. (not 90 Life Minerals as the title suggests) AS is one that is mentioned.
Look into if you are low or deficient in vitamin D too, 85% of us here in Uk are either low or deficient in vitamin D and many don't know it, or consider taking vitamin D3, it is good for helping all sorts and preventing many conditions or making conditions better, it is also inflammatory. Not saying it will help, but 'might' help.
Vitamin D (anti inflammatory,) cured my lower back pain and others awful pains, joint/bone pain I thought would never be cured.
Some Vitamins can help relieve pain, though doubt it can cure long term problems, only relieve them. (pretty good sometimes and they can work quick) Also people who stay in doors without going out into the sunhine might be vitamin D deficient.
Going to the Drs on Monday, I will mention all the information that has been given to me on this site, is well worth looking into, , today I had a day I couldn't get out of bed, I just need someone to fix me , if only for a hour 😫 I also got an appointment with the pain specialist in 2 weeks after having my procedures done for the second time in 10 weeks, I just can't keep going to theatre getting knocked out, and still in pain sorry for the grumbling, hugs to all that need it Terri
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