John J. Cush, M.D., the Director of Clinical Rheumatology at Baylor Research Institute, explains the basics of spondylitis and its family of related diseases. He talks about diagnosis, causes, prognosis, and management.
I am HLAB27 positive and had my first symptoms of AS when I was 17 years old. Because I am a woman it was not diagnosed til my late 40s and I am an absolute disaster at this point. All 3 of my children inherited this gene from me, there really needs to be a better awareness that women can and do get this.
100% agreed. I am just waiting for my doctor to come back from vacation to confirm the diagnosis but it looks like this is what I have too. I am definitely HLA-B27 positive though. I've had chronic pain that has been undiagnosed for over thirty years. I am 51 now and just getting a diagnosis when my symptoms started around 18 years old... I am just starting to find out that it may be because I am a woman too that I was also not diagnosed earlier... On top of that I have another genetic disorder called G6PD that also was overlooked because I am a woman. Even though I have been tested for it multiple times and come up positive every time, they still say it isn't affecting me.
Now that I am watching this all the way through I see he says that we should take NSAIDS, but those are contraindicated for my G6PD as is Tylenol, Sulpha drugs and aspirin, so I really have a perfect storm going on... 😞
Yes...I also needed 10 years from my first Symptome till almost diagnosed. Doctors even ask me " you Sure that u Finger is not always double big?" 😂😂😂 yeah bro, i am, I am..
Thank you, Doctor Cush. I'm HLA B27 negative and I've had Ankylosing Spondylitis for 20-plus years. My 36 year old son has inherited a s from me and has been ill for around 10 years. My grandfather who has been dead since 1971 had severe kyphosis and probably had Ankylosing Spondylitis as well although was not diagnosed Praying that no other family members develop this Dreadful disease.
I developed AS at age 62. Maybe after menopause and HRT? It hit me all at once. Excruciating pain in hips, shoulders, ankles, wrists, hands. But luckily no fusing. ESR and CRT were through the roof! Very little pain now, but all the medications definitely cause a lot of problems! Horrible disease!
It has been a very long journey for me on AS. I have suffered for 36 years before being diagnosed and had 4 lower back surgeries. VERY few doctors appears to know about AS; most importantly, when they do not know what is the source of the problem or one of the problem AS brings, they tend to make the patient believe that he/she creates stories or have to toughen up. No doctors in SO many of my visits has ever said, sorry this is not easy for me to understand, you need to see a rheumatologist, or something similar. Why is it soo difficult for doctors to make referrals to other doctors out there that might have better answers for patients.
You have to be your own doctor and do research. I found out what I had by searching the internet. I told the doc that I know what I have and I needed to be tested for the HLAB27 Gene....which came back positive.
Sorry Chloe, but the fact that you might carry the gene does not mean you will develop the problem... lots of people have the same troubles and do not carry the gene & vice-versa... this is the major issue. Plus if you can truly be the doctor of your self... based on your own research, than why at the end the need to go to the doctor.. just because they are allowed to prescribe medications...? For what we pay, there should be, by now, a satisfaction guarantee... or, otherwise, money back... I bet ... diagnosis will be way more accurate under that scenario..
@@phus2001 I've been struggling for a long time as well. It finally got so bad i asked to see a rhumatologists. I got diaigosed with AS. Sometimes you have to take matters into your own hands and be your greatest advocate. Blaming everyone around you for your pain isn't going to get you anywhere.
They don't want to admit they don't know something - and there's a globalist agenda on to reduce world population so doctors are being told not to treat people in the hopes more will just die out. That and there's no profit in cure - only in chronic treatment.
I can relate. It took 35 yrs for me needless to say we both have had many wasted years that we could had been taking meds to get this crap under control before serious damage had been done. Just know you are not alone
There is a clear relation between as and leaky gut events. Since I reduce my starch intake the pain reduced However I have discovered other triggers for me such night shift work and emotional stress
And it turns out we now know that high levels of emotional stress can raise blood sugar and insulin in the same way starch/carbs/sugar do - which begs the question - is this condition actually due to an excess insulin level - which is known to promote the growth of tissue in general.
15:12 "diagnosis is delayed 5-9 years". Nor shit!!! The doctors DO NOT want to listen to the patient, when symptoms appear. They delay, deny, avoid... until is too late to take any action. That is if you lucky to get an appointment. First i had symptoms 8 years ago, x-rays were taken confirming spinal problems every year, no advice has been given. Only now I have been referred to an orthopedic surgeon, appointment in 11 months. In the meantime i cannot walk, pain killers do not work.
After researching due to extream low back pain and neck pain, heel pain etc. after diagnosis of PsA suspected AS. New rheumatologist dismissed it and labeled it mechanical back pain. Went to orthopedics for help and MRI showed romanus lesions. Rheumatologist would not change my diagnosis. Denied 4 times for disability. Fired him and original rheumatologist diagnosed with AS. Hoping disability will aprove me now.
All your descriptions are for the first 20 years...exercise after that gets harder and much much more painful. 46 years now after diagnosis...57 yrs old and have found very little relief from Any of the above in 25 years. It gets worse People. Alot worse..
So glad i found this. I have been for a few blood tests, i had test done for rhumatoid arthiritis it came back false negative, my test for imflammation came back positive, my vitamin D came back low. I had xrays in my back/hip they came back as nothing showing, my neck and back came back saying i have arthitis. Its so confusing as my worst pain comes from my back and hip, although my full body aches, i wake up 2-3 times a night with my forearms, elbow and shoulders aching, my hands ache, wrist, ankles, hip and lower back, And my groin. Also have plantar fascitits in both feet. I have been referred to a rhumatalogist but going to be a long wait. Dont know if i can wait months i have been trying to get this sorted for years this is them just doing these tests. I am so down about my day to day life, my pain on a good day is a 7 out of 10 on a bad day 10. So tired and fed up. Take meloxicam and dhyrcodiene, vitamin d, and onzeprole
I am a HLA B27 negative Caucasian female. I've had A.S. 20 plus years and I was misdiagnosed with Dish disease for many years. I have irreparable joint damage.
I am also female and I am HLA-B27 negative. I asked a doc about this 15 years ago and was told it’s a man’s disease. So fibromyalgia and irritable bowel syndrome was always the misdiagnosis. So thankful for my new rheumatologist actually listening to me.
Really interested in the comment at 31: 40s that everyone with spondylitis should take an NSAID every day. I have seen a 2015 study by Sieper et al quoted which seems to suggest little difference in radiographic progression after two years between continuous and on-demand use of NSAIDS. This was mentioned most recently at the Toronto 2017 AS public forum, at 41:50s here ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-tqsmCV8CmJc.html What are your thoughts on this?
I have heard on other channels that is in fact the case - that there's a link between mono and AS. There is also a mutation which damages the gene that controls TNF - which has also been found to be invoved in normal mechanisms of removal of old dead bone tissue. Serapeptase supplements are supposed to help in old bone cell removal - which means SUR's might also be implicated.
🤯 Had mono as a kid. Swear up & down it left me with Epstein-Barr flares. Among many other issues. This is a crazy point man. Never even thought this. 👍
You can reverse your Ankylosing Spondylitis by changing your diet which involve stop eating gluten foods like wheat, rye, barley, stop eating grains like rice, corn, oath, stop eating night shades like pepper, white, red or yellow potatoe (you can eat sweet potatoe), stop eating vegetable oils, peanut, stop eating fried foods. stop eating processed foods, stop eating white sugar, stop eating pasta, bread, dairy (milk), eggs, chicken. You can make smoothies like blending green vegetables like kale, spinach, cucumber, you can also cook vegetables, eat a lot of vegetables, eat coconut, avocado, eat home prepared/made whole foods like sweet potatoes, yams and beans. You can also do exercise like walking, cycling.
Yes ,I am from Nepal ,Rauthst (Judibela)My Name is Narayan Kumar Thapa.I am Suffering for 8 years .Now I am full bind ,can,t walk.kindly your Assosietion help to treat Gene therapy.?
My mom has had AS since she's had it her whole adult life. I am aware that's it's hereditary do to the HLA-B27 antigen which makes me twice as likely to experience its symptoms. I'm 25 and according to my research, people are diagnosed with AS when entering adulthood (17-18). To this day, I've shown no signs of the disease. Does that mean I've been exempt or do I still have a chance to contract it later in life? Thanks for your answer. Cheers!
You can still get it later on. Theres a documentary called "in my bones" and a father in his 50s I believe had a sudden extream onset of it within just a couple days. Very good video u should watch
Yes, you can get it later. It hit me around 38 and progressed rapidly. Aging seems to trigger it. also research TNF as it's implicated too - since it's now known that is involved in normal removal of old dead bone tissue. It's even thought now AS might not be growth, but merely failure to remove old bone so new bone cells pile up on top.
Took 35 yrs to get it diagnosed no HLA B27. Since around age 14 my SI joint started to hurt today at 51 it snaps crackles pops the pain is fking EXCRUCIATING!!!!! it just gets worse by the hour Enbrel Concentyx humaira. Methotrexate. Nothing is working. When the pain gets so crazy bad I will hit the ER. First thing they do is pull out the syringe with Morphine & Valium. Ha in the midst of a huge Oxy crisis.
If you have Enthesitis, you will have pain with activity, also. The anti inflammatories kill your stomach...then you need to go on med's for the damage to your stomach...no thank you.
I am B27 negative, X-Rays and MRIs were clear and bloods showed no inflammation. Yet I wake up with LBP, have chest pain, poor lumbar flexion and recently developed plantar fasciitis (although I do run so this may be because of that). The pain responds well to NSAIDS. 30mg of Etoricoxib or exercise helps. What the heck do I have?!
Just a suggestion and this is my opinion from having non HLA B27 ankylosing spondylitis 20 + years. Myself and most persons that I've known with ankylosing spondylitis firstly develop stiffness, soreness and lack of range of motion in the spine causing trouble turning my head side to side, bending at the waist. It seems like almost everyone with ankylosing spondylitis develops painful inflamed sacroiliac joint. The SI joint can cause excruciating pain! I am HLA B27 negative so I was misdiagnosed early on because even a little more than a decade ago if you were not HLA B27 positive then it was unlikely that you would receive an ankylosing spondylitis diagnosis. Over 5 years, I was diagnosed with an osteoarthritis related disease called DISH. This is a less aggressive disease with similar symptoms that it might be worth looking into. Hope this helps, prayers that you are feeling better.
WorkingK9 You probably should have listened longer or better because he did say that not all AS sufferers are HLA b27 positive. He said that many times in the lecture. He said that there are patients who are HLA b27 negative and gave percentages. Honestly, this was the most accurate presentation I’ve seen on the web so far.
Rastereyes I did listen to the whole thing... the problem is, for much of the first part of the video, he repeatedly stated that a patient must be HLA-B27 positive. LATER in the video, as an aside, he kind of mumbles that one can have AS and not be HLA-B27 positive, but those comments are negated by how adamant he is throughout most of the video that a patient MUST HAVE the HLA-B27 gene.... listen again...
But others are - such as ext1 which controls TNF which is needed for normal removal of old bone tissue. Research points to the possibility that lack of TNF caused by ext1 damage or deletion may cause excessive old bone cells not to be removed properly causing excessive bone growth. He did mention AS can occur even without B27.
@@WorkingK9 Dr says MANY TIMES/THROUGHOUT the presentation that MANY PATIENTS TEST NEGATIVE FOR HLAB27. Jesus Christ, pay attention! AS must damage hearing/comprehending in your case.
