I was diagnosed with HLA-B27 when I had anterior uveitis x2 and they tested me. My back hurt me enough today to need to leave work and I'm only 38. I'm an anesthesia provider at the largest hospital in my state, but no one seems to know about this. I would love permission from JJ Medicine to present this and talk about it at our grand rounds which is a morning teaching session we have every Thursday. We're a teaching hospital! :) Thank you for this very well done video
It is very important for doctors to diagnose women who present with symptoms. I was misdiagnosed for forty years because this was a "mans disease"! I was diagnosed at sixty after I had started to lean forward.
@@bluaurora8635 Good luck going forward with treatment. There are many woman online with this. Facebook has a few groups. It was very helpfull to me when I first got diagnosed, lots of information.
It’s a horrible disease, I was diagnosed at 29 and I’m now 54. I work full time and was in senior managerial roles but found stress made everything worse so I have a less demanding job. I still travel and have a great time and stay as active as my energy levels will allow. My spine is fused and I declined biologics due to the potential risks and complications. Getting in and out of a car is a challenge, putting socks on, picking things up off the floor and a very stiff neck are the main symptoms I have. The most worrying thing for me is the increased bouts of uveitis, it concerns me because I need my eyes to earn a living on computers so I pray it doesn’t result in a serious sight impairment. Good luck to anyone out there with it. Not many people bother researching it if they know someone with it so they don’t really understand. ❤
similar here i was 29 now 53 in some ways i got lucky i changed docs at the time of diagnosis as the original ones where described as butchers with their treaments on my younger brother who also has the disease, The new docs put me on a pretty heavy course of prednisolone as all the other drugs at the time mad me ill. After winding back off prednisolone it just comes and goes obviously the damage is mounting each time but im doing way better than expected. The docs i changed too had different philospphies and where more open to different ideas things like connections to night shade plants,other allergies like hayfever which i get bad for a month or 2 and the AS seems to spike at the same time,stresses especially emotional stuff at the time i was in a marriage that was coming apart and her outbursts where getting worse, and at time ive used pot and too a lot of success but i dont always enjoy the high, chiropractor ive been going to one ever since. Im reallu interested in your comment about uveitis as over the last couple of years my eye sight has fallen away and i assumed it was age i will dig into that. Do you have issues with bouts of fatigue just exhaustion and the brin fog that comes with that and mood swings? I hope thats ok to ask hope your doing ok. Oh i also knocked back the biologicals and controversially the vaccines as well, Ive never been the sort to get colds etc im rarely sick other than AS i even have less migraines now and when i did get covid the only symptoms i had where a weird headache and mild fever for 24 hours i was concerned and a doc shared this concern that i have a trigger happy immune system seemingly under control anyway all the best
@@igavehimadollar3354Hi, yes it never ends. I get fatigue but never sure if it’s work and life in general or AS, I can get brain fog occasionally but don’t seem to get mood swings. I don’t generally get colds and never had Covid. Stress definitely makes it flair and I need a good high backed reclining chair at home. A TENS device is great for spots of pain. All the best
I too was finally diagnosed last fall with AS at 67 because it is "a man's disease". Apparently, more women like me are being diagnosed for a number of reasons including that rheumatologists are finally getting referrals from family physicians for women who have complained about back pain for years. And yes, I am HLA-B27 positive .
That is what finally got me diagnosed. I was referred to an Orthopedist whose specialty was back issues. He ran the blood test and I finally got diagnosed. All the pieces fit. Hopefully medical schools correct their curriculum and practicing orthopedists take note and pass this on to interns and residents.
My husband suffers from AS and is HLA-B27 positive. Thank you for sharing this video. It was very informative and eye-opening for me. He started experiencing pain around 16 years old and was diagnosed in his late 20's early 30's. Over the years he has been on many different medications and at 57 years old is currently on a biologic.
Does your husband get nerve twitches or lose of movement or motion in feet ? I am suffering from this and I feel so scared I am 27 years old and I'm completely down. I don't know what to do
@@killuminatikilla3235 I’m 48 and am having to be my own advocate. From my experience, here in the states at least, see your primary care Dr. and have a list of all of the symptoms you are having. Watching informative videos like these are how we recognize our symptoms…and how we communicate it to the Dr. and let them know how many years or months you have been in pain as this video describes. Tell them you want a referral to a Rheumatologist. The Rheumatoid Dr will run the test needed to diagnose what’s going on. I’m in the process of getting a second opinion because my Rheumatoid Dr only wants to go off of test results. I’m seronegative. Diagnosed with RA and Sjogrens…yet he ignores all of my appeals that something else is going on. I really relate to the Lupus symptoms as well. Which would make sense…all of these issues fall under the Lupus umbrella. You’re not alone…this is how you find your voice…and be an advocate for yourself. Keeping you in my prayers.
@@sharonvaldez9059 i totally agree that we need to advocate for ourselves. I have changed both, family doctor, and rheumatologist. Those are only people who think they know better but AS is rare so they oftentimes have no experience and misdiagnose us ..blessings!
Incredible lucid video. Thank you for helping people directly and indirectly for those who may not have this exact thing. A lot of people have to be their own advocate, this information helps the patient regain some power to act and the belief that it can get better. Amazing :)
Thank you so much for all the detail. I started having neck pain when I was about 24-25. I was told by a doctor that I had some beginnings of arthritis in my neck.I'm getting ready to turn 55 next week. And i know now that I have ankyloingspondalitis as I just received my diagnosis. . It is definitely debilitating.I have to eat well and do yoga.I still have to work but there are definitely days where I wish that I had someone that could support me financially. I have terrible IBS and a few other problems you mentioned. I also have terrible headaches and recently found out that I tested positive for HLA-B27
I'm now 37, and have been affected by this since I was around 19. The diagnosis started with a positive hla-b27 marker, later followed by mri results unfortunately my neck is completely fused with screws and rods due to an assault last year, but as a result I've had greatly diminished physical activity and have noticed my lower back has been significantly affected. Last week I was in the hospital (due to my neck hardware) and the mri taken has shown progressed inflammation, so that's going to be fun :). Anyway, video has pretty well hit every sign and symptom I've had over the years. Has been a joy to struggle with, for sure. If only I hadn't waited until my early 30s before really looking into it...
This is an excellent discussion on AS. I have it taking Humira on a weekly basis. AS is debilitating for sure and I wish I would have been diagnosed 20+ years ago when it first started.
I have been suffering from AS since 4 years roughly. Doctors just increased or decreased the nsaid dosage in all these years. After a time, the medicines also did not give any relief. Then, I switched to yoga. Trust me, it works as magic. I don't know of others but this worked for me. I do surya namaskar as many as I can, some general stretching, on chanting, pranayam, and few spine exercises seen from a physiotherapist on RU-vid. I have so much relief. This is my experience with AS.
@@musico_rajeev R E DADA KIYA BATAYU BHAI MERA VHI BAHUT DIN SE DARD KARTA THA SHOLDER HIP JONTS LOW BACK PAIN ABHI 4 MONTHS SE NECK OR HEAD PE HO RAHA HE BHAI. HLB 27 TEST KIYA TO POSITIVE AYA PATA CAHALA ANKOLISING SPONDELISH HUA HAI KIYA BULO BHAI PAIN KILLAR ROJ LENA PARTA HAI JIS DIN NEHI LIYA USDIN TO MERA DIN HE KHARAP JATA ALL TIME HAME MAR NE KA GAM SATA TA HAI IS BIMARI SE KIYA NORMAL LIFE ME AA SAKTA HU KUCH SWIMING KARKE YOGA KARKE
Im 31, co-diagnosed at about 20yrs old along with psoriatic arthritis (my psoriasis diagnosis was at 13yrs). I will say... the three of them together are a force to be reckoned with....
New sub here! Loving your info! I have ankylosing spondylitis, and I love the way you explained it. I love all the details, and even found myself learning new things!
Thank you very much .You are explaining my case: :) I am suffering from AC and i am in my worst stage.Can't sleep at nights because of the severe pain.I have to move and move and move..:)
I'm HLA-B27 positive and have pain all the time with the AS. Like you, it's hard to sleep. I also have been diagnosed with Rheumatoid arthritis and Hyperthyroidism. It's very challenging to have a good quality of life. I pray and God gives me strength. I go to church also. Hold on and have faith. Praying for you!🙏 .
My blood work came back today positive to this. I have zero issues with back pain, spine, joint, arthritis nothing. I do get iritis in my left eye occasionally and got it last month very bad I’m just now getting my eye sight back
It was helpful to learn that just because you are hla-b27 positive doesn’t mean you have or will get AS. And you can develop AS without testing positive. AND you can have AS AND fibromyalgia at the same time.
I'm negative HLA-B27, a woman, had pain in my lower back from 5 years of age! I don't think it's more common in men, I think ots misdiagnosed in women.
This was so helpful. And this is me a million percent. Crazy, I went to a rheumatologist to test fro lips years ago and told me I have this and that it would cause problems later. I pretty much brushed it off because I was dealing with all the testing for ms and lupus at the time. It was cancer , or cancer got in the way. Lol. But now after all that this video is my everyday and every night straight down the list. I just keep going. If it’s awful I take night quill so I can sleep. And it’s definitely getting worse but… I’ll keep on going.
I’m a Women without HLA-B27. I have Ankylosis of my spine on MRI,CT & a high sed. rate blood test. I also have mechanical back issues with multiple herniated discs and have had multiple spine surgeries. For years I was misdiagnosed, now I’m being offered Tnf inhibitors, I don’t know if the treatment is as bad as the disease.
I have had a horrible pain in the top of my back for months now every morning and it sometimes wakes me up, give me thirty minutes of moving around I am ok...does this sound like as? Thanks for your help 🙏🏻
Have you heard of this diagnosis also accompanied by costochondritis? Pain and inflammation in the ribs? I have had the back pain for about 7 years since I was 15, and now severe rib pain for almost 2 years. In the process of trying to get a diagnosis for AS.
Amanda Pittar I have not been diagnosed but have had symptoms for the past 10 years. I also know of another woman who has been diagnosed with it. Makes me wonder if it’s really as rare in women as they say. 🤷♀️
I was diagnosed because they finally tested my black/native mother after years of having “unspecified RA” and being ruled out for lupus so many times. It the last test they found the HLA -b27 antigen. I was having reoccurring Uveitis and this caused them to test me due to my moms diagnosis and I was positive and this made sense
My father got AS at 19 in the army he died 3 days ago at 82,5 he had AS and COPD he closed his eyes at the hospital then he was gone he simply decided that it was his time he didn't want to experience the risk of a wheelchair and oxygen assistance he told me "if i can't walk on my own then i will stop taking my medications" R.I.P. dad you were a warrior 1941-2024 i'm 32 and i have had AS since 20/21 it's hell on earth he had a older son who died at 46 had severe AS it was a heart attack the heart exploded so yeah AS is quite scary...
I am Hlab27 negative. But some symptoms of my body is like Ankylosing Spondylitis such as enthesitis in the SI joint, stiffness and pain in knee joints, slipped disc and low back pain after sitting for a long time, weakness and pain in hip joints. Am I suffering from Ankylosing spondylitis?
I was diagnosed AS with HLA-B27 negative when i was 28 and now i am 42 and the condition is not that worst now then it was at the time of it diagnosed. I am taking medication twice in a week and still in a puzzle that do i really have AS?. Last time i saw my rheumatologist was three years ago. In my case routine exercise is easing the pain. I have been taking medicine name "NUCOXIA" which comes in 60 and 90MG and available in India and approved by the doctor in the UK.
I have HLA-B27 and AS. It also has some positive effects on immunology , that has sellected it to survive in early history of man, like stronger immunity against the common flu, epstein barr virus, and HIV virus among others, and weaker immunity against malaria. In areas with high incidence of malaria there's populations with lower prevalence of the HLA-B27 gene, and vice versa. There's much new research being done on the different HLA genes. I have a question: I have always felt I do have a strong immune response to viruses. I get very often pain and tiredness and sore eyes and dry sinusses when having a virus and colds, but do not get very sick in normal way, like never cough, almost never fever. Do any of you have the same, as in getting a strong immune reaction, maybe more joint pain and tiredness, but not really having a serious regular cold or fever? The endresult is feeling sick, and quite often, but more in a "immunity kind of way". If this makes sense to anyone? It feels like the immune system is very sensitive and very attacking to everything it meets. In the nature state this must have been good in fighting of viruses, but the AS pain and tiredness comes at a very high cost. 😂 I feel HLA-B27 is very much the number one reason for my history with immunological sickness, having AS, and having had Sarcoidosis and Reiters arthritis.
it may protect you from covid as well I have had this from age 16 i am now 73 i have had remissions but now totaly disabled and wheelchair user and constant pain
I think I have AS. My aunt was so severely affected that she couldn't stand up straight. I have hypermobile Ehlers Danlos Syndrome and unfortunately this has overshadowed any other diagnosis. The pain and stiffness started in my lower back, then severe foot/ankle pain and now my knee and neck are incredibly painful. I live day to day through gritted teeth. I'm in the UK and don't know where to turn. We have a waiting list for x-rays in Scotland! Has anyone been badly affected with foot and knee pain?
I think I have AS too, I already have hypermobility but it’s not diagnosed, it’s just been evident since my birth. Pretty obvious my joints don’t like me. They put on my ER chart that I should look into AS. I have swelling in my lumbar spine and brusing. I have issues with all my joints but my knees get stiff and so do my ankles
I also have hypermobile EDS and feel this is the reason given for all my pain.I’m not convinced,I’ve always thought I might have AS as well.The stiff low back pain wakes me up constantly at around 4am every morning and has done since i was 18 ( I’m now 45) .I have been back and forth to the doctors over the years but it’s never been looked into.I’m also in the U.K.
Ive experience severe feet pain . It's not all the time, thank God. It's gotten so bad , I've wrapped my feet in my heating pad. I didn't connect the foot pain to my back pain until I saw this video ...
I am getting knee and ankle pain, and I have AS. But I am not sure why there is knee and ankle pain, sometimes I think it’s “imaginary”, or “not that painful”. I don’t know if people who have pain symptoms ever doubt their own symptoms but it happens to me sometimes. I also get sore eyes, which I have just assumed as being caused by the air. And sometimes I can excessively feel my heartbeat in my chest. I was diagnosed this year but have been taking photos and scans for years. In a way I’m relieved. I’m 30 now but now I feel like their are a bunch of other symptoms to deal with. I still need to book a rheumatologist.
I've watched this video twice. And I'm watching it for the third time, because I'm desparately trying to manage the pain and inflammation that I have. My rheumatologist suspects that I have this.
As explained in the beginning of this video, there is a link to your gut microbiome. Get a food intolerance test, leave away any foods high in oxalates reduce sugar and processed carbs.
@Noname I’ve been drinking black coffee every morning and have weirdly found that it helps me. I know some people get jitters from caffeine, but I’ve been able to not take medication for a few months because of the daily coffee. Maybe there’s an anti-inflammation effect to it, I’m not sure about the pharmacology. I just read a book yesterday on Ankylosing Spondylitis and wrote down all the genes responsible. I was considering to get tested for the 5 genes listed. I’m negative for the HLA-B27
I will use homeopathy medicine like rhus tox and arnica Montana it work for me but I am in early stage and no bamboo spine just little slip disc homeopathy give me 80% relief may god bless you consult good
Panchsakar Churna is an Ayurvedic formulation that consists of five ingredients named as - Saindhav Lavana, Swarnapatri, Shatapushpa, Shunti, and Balaharitaki. It is naturally detoxifying, thus it removes the toxins from the body. This churna is mainly beneficial in cases of disc prolapsed, cervical pain, lower back pain, ligament sprain, neck stiffness, sprain in muscle, tendons. Panchsakar churna helps to relax the muscles around the neck and also reduces the inflammation.
Can Spinal fusion, SI joint fusion and knee fusion decrease our body height if it does how would we know what is our actual height without Ankylosing Spondylitis is there any way available please reply.
I am also suffering last 2-3 years and my personal life as well as professional life is disturbed. Dr can't dignosed acutal problem. Plz anybody suggest doctor/hospital in delhi
It was my greatest opportunity using Doctor Ani John herbal medicine for Shingles virus which gave me a lot of concern, today I have been cured of Shingles virus since November 2020 I appreciate Dr.Ani John for his help so kindly hearted 🙏❤️.
Is there any diet for this decease? I have it and it hurt till my feet joint all pain....I am a heart attack survivor and I cant take NSAID. I am a vegan for 15 years.
I am unable to touch my toes. I cant sit at a 90 degree angle with legs out torso up. My back has mild pain since about 15 years old. MY mother has spondylitis and was diagnosed twice with it. I am wondering if I possibly have it. I am also unable to do sit ups without a pillow or I get a bad pain on my tailbone. I have tried everything for touching toes from stretching tight calves to stretching hamstrings I worked on hips and pelvis. I never been able to touch my toes as far as I remember, but I feel the stiffness at the lower back. My spine quits bending preventing me. I attended a military youth program for 6 months where we had to exercise and stretch daily. I had red eyes the whole time. Im not sure if it would relate, but it went away when I left and quit daily stretching.
I am HLA negative, and I have AS. My hips and ribcage are pretty much fused. Actually, my heart surgeon asked if I ever heard of AS. After healing from open heart surgery at 63, I then went to a rheumatologist, where I got an official diagnosis by x-ray of hips. SI joints fused. I've been on Humira, and It helps but also PT twice per week for the last two years.
Hi if it hurts that joint when i try to sit in a cross legg is that a positive test? I cant push my leggs down in that position and my tendons are as tight as guitar strings. I have noticed the loss of flexibility to a worrying degree.
well i must have something else with mine bcuz any type of weight training or working out actually makes my pain worse especially the area i work out. sometimes the muscles lock up in pain for an entire day! i was working out and exercising regularly before my symptoms suddenly started last year. they said i had mild symptoms for over 20 yrs but didn’t realize. the burning of eyes, the on and off fatigue and stiffness in my lower back and tightness in muscles from time to time. i thought it was bcuz i was deficient in Vit D and magnesium. but something triggered it into an accelerated state because i’m now having every symptom associated with this disease and my back wasn’t even bothering me at the time. it’s been 6-7 months and my spine and neck just started bothering me about a month ago. they were diagnosing me with RA bcuz i was having joint pain that suddenly started and after two weeks internal pains then muscle pain then by 3rd month suddenly started losing weight. almost 30lbs of muscle the last 4-5 months. now bcuz of the neck pain which i NEVER had before im having issues with arms, hand pain and weakness and loss of function. it’s moving so fast throughout my body and that’s not normal. i think i was exposed cv19 and it has accelerated the progression of this!
@@troyrodgers9790 your correct I had covid 19 a year ago and mine has accelerated also now, same as you I have lost lots of weight and muscle mass ans all my joints are in pain now I cannot weight train anymore I’ve never been this bad
@@Dj.slothy crazy thing is i had no symptoms only suddenly developed an issue with phlegm building in my throat back (post nasal drip) in march of 2020 and tried everything to get rid of it. still have it now. that was all i dealt with until my symptoms suddenly exploded on me one day in august while my mother was in the hospital for surgery. she was there 3 wks and i was stressed about it. came home from work one day and that evening I was about to sit on the sofa to relax and BOOM the pains started. first on the outside of my right elbow. i thought maybe i hit it on something then two hrs later i couldn’t move it. no swelling, no redness. just pain and stiffness. by morning it was normal again. that went on for a 3-4 days then jumped to the other elbow same spot. this pattern continued for the next week jumping to shoulders then wrists then knees then chest pains and burning headaches then back to my shoulders, especially left where it stayed for a few weeks. pain always started around the same time, a little after sundown sometimes it would progress sometimes it would ease up. but by morning it would be gone until about the third month when the pain would still be there in the morning and then i started having digestive issues then i started losing weight and getting weaker. so this seems to give me a break for a few days but when i starts up its always more than before and has spread to a new area of my body! it has now been attacking my neck the last 3-4 weeks and my mid spine the last 2 weeks burning and stiffness i never experienced before maybe really mildly but i always felt that after maybe working out too hard or not enough rest. but it was nothing like i’m experiencing now
@@troyrodgers9790 yes same my knee and shoulders are swollen stomach pains loose stools I feel weak too I need meds asap otherwise I don’t know what to do
When I breathe upper middle part of my spine hurt and ooooh it’s a family trait ,and rare interesting not many have it ..maybe it’s a slipped degenerative disc or strain just started hurting yesterday
hopefully its just regular back pain. But mine it has lasted for more than 3 months and its site are changing now radiating from the back of thoracic towards my right hand. AS is of concern from today onwards.
@@padmamanandhar7438 Yeap it’s all a delusion that’s how I got on here ... I had symptoms similar to this stuff and bad symptoms of ibs.... last year I’m happy to say it’s all a lot better
Note to self: HLA B27 has an effect on altering the gut microbiome. Genetic and Nongenetic Risk Factors combined with gut microbiome alterations lead to the activation of lymphoid cells, the lymphoid cells then migrate to the axial skeleton and the peripheral joints where they produce interleukin-17 and interleukin-23. The interleukins along with tumor necrosis factor alpha and cyclooxygenase enzyme, mechanical stress leads to inflammation.
@@Envy.1234 what they did when i was first diagnosed was some xrays and they saw something with my si joints and then they did an mri to confirm it. My esr has been high but im on biologic and it helps control it.
@@Charmed22-_- I m only 20 year old and scholar doctor said that I might have AS due to high esr and CRP and sacroilits shown in MRI do it effects my life expectancy or carrier building if Take proper treatment
What happened to patient confidentiality, you described my back pain that I have had since I was 20 years old and I am 55 years old now. However I have been able to keep it under control by avoiding inflammatory foods, I discovered this as a result of avoiding foods that caused me heartburn (fruits, wheat); stomach cramps and bloating (onions, pineapple); and any food that caused what I call ringsting (itchy anus).
It was my greatest opportunity using Doctor Ani John herbal medicine for Shingles virus which gave me a lot of concern, today I have been cured of Shingles virus since November 2020 I appreciate Dr.Ani John for his help so kindly hearted 🙏❤️.
I’m a woman and I have it. I’m white and I have it. And everyone I have ever known diagnosed with it are white woman who were fist told childhood arthritis RA or fibromyalgia or like with me whose lost most vision pars planitis uveitis that began with shoulder pain and iritis. My pain is so bad especially at night
Is a autoimmune disease where your body attacks the joints causing inflammation. To protect itself (from its self) the spine protects the joints with bone. The treatments available try to control the inflammation so the spine doesn't fuse.