Thanks for making these videos! I'm waiting for a confirmation of my AS diagnosis and am relating so much to the things you're describing. It's amazing to see your travel vlogs and hear your AS stuff, so much respect for you! Hope your travels continue go well xx
justanotherface14 aw thank you so much! Good luck getting confirmation on your diagnosis and I hope you’re feeling better soon! I’m so glad you like the videos! That’s literally why I started making them so it makes me so happy! 🤗💕
I was diagnosed with AS probably 40 yrs. ago and again with blood tests diagnosed with AS this past Dec. (l’m now 70, and still in chronic pain, EVERYWHERE). No one knows what I’m talking about when I mention it. No dr. has “really” addressed this problem. I’ve had back surgery, and last Sept. had a pain stimulator implanted in my back. Going to a new dr this month and now doing more research on it. Should have gotten help why before now!!! Thank you for your videos.😘 Hopefully this chronic pain will lesson with proper meds and drs paying attention to what I tell them! Hopefully your videos will help others with AS, or at least be tested for it. Ty again!
Fishlips 1012 so sorry to hear about the pain you’re in and your experience. Thanks so much for sharing and I’m so glad you found the video helpful. Good luck with everything ♥️😘 xxx
I've had AS for 53 years...I guess I've proved that AS can't kill you ! Like you, I too travelled the world, backpacking with, and despite AS ..India, South America, S E Asia. You need the right spirit... I can see you have it. Don't give up. A couple of times I did...but managed to turn it round, and still going strong!
@@elavarasankaruna6987 Hi Elavarasan; Apparently my spine has become slightly curved from left to right, but you would never notice, and I stand up as erect as I did when I was 18. A pharmacist told me that I would start to bend forward if I lived long enough but that certainly hasn't happened yet and I'm 72 now! I think all the exercising has helped prevent this.
Tony Day happy to hear it you managed this disease this much beautifully.... actually we people need these kinda positive things to stay positive and win any kindah disease....
Thank you for sharing!! Here in the US (or at least where I live in the US, a very poor state), for some reason doctors are very resistant to ordering MRI scans even for diagnostic purposes. I’ve been asking for one for 2 years and keep being told no, it’s “not medically necessary”-but they’re clearly wrong. It can be a fantastic diagnostic tool, and my hope is US doctors learn to appreciate it for that more, rather than just using it for injury care. Hearing that an MRI helped confirm your diagnosis makes me feel like I have to keep advocating for it for myself (so thank you again!), especially since in my experience doctors also rarely give official diagnosis either. I’ve been told “I think you have ankylosing spondylitis,” and then all they put in my chart is something like “inflammatory polyarthropothy.”
Hi from the US....Perhaps find a rheumatologist that can do all the testing and imaging to make a proper diagnosis. That's what I will be doing after the first of the year. All the best to you! 🌷
Thanks for sharing, its absolutely common not to have inflammatory markers elevated. I was told exactly the same by GP'S "here we your ESR, CRP, are normal " you dun have anything. Although at one stage when I had a flare up and requested blood test they were elevated!! Unfortunately GP'S aren't as good on picking Spondyloarthritis (seronegative arthritis ) I'd even say lots of old school Rheumo as well. You'll have to fight to get the right diagnosis, otherwise it's too easy for dr's to dismiss someone's symptoms and brush them off. Are you on biologics? And if yes how is it going so far ? Stay strong, from Australia 🇨🇰👍🏻
Hi Izzy! I'm not sure if you're still around on UA-cam but just wanted to say thank you for making these videos. I know you said in a previous vid that you just wanted to provide support to others who may be going through something similar, and I can honestly say you are making a huge difference in my life. I have an MRI in two weeks but my rheumatologist & other specialists are almost certain I have AS. My x-ray showed extreme inflammation of both SI joints. I've never actually felt pain there though unless I lift my legs when I'm lying down (that popping noise.. haunts me). Tthey did the x-ray just in case and whoops it was there! My main symptom that started my journey was the chronic upper back pain (from neck to just below the shoulder blades) that is horrendous in the morning (feels like a metal rod has been lodged in my spine) and gets better with movement and exercise. I'm only 23 and I'm a female. I also have TOS (Thoracic Outlet Syndrome) which is where the nerves, veins and arteries between my clavicle and my first rib get squished together due to structural anomalies. This causes random shooting pains down my arm, severe weakness in muscle strength, and my blood gets cut off if I lift my arm over a certain height. Warning: negative thoughts ahead. It's been incredibly difficult to swallow the reality that my life will not be as I planned. I spent my entire university life having fun and living the life of any twenty-something year old, and now everything looks bleak. Half of my energy goes into managing my pain and I don't even realize how dead tired I am by 3pm because my body drains itself trying to handle the pain. I have no upper body strength (how will I pick up my children when I'm older and play with them?), and the back pain can be so debilitating that sometimes all I'm able to do is lie on the floor and stare at the ceiling. I also had big plans to go to grad school and travel the world before this whole mess, and now I have anxiety about how my pain will interact with more school (more siting at a desk), and more travelling (more holding and carrying bags, more fatigue). Seeing your videos gives me hope. You have such a positive attitude about it all (though I'm sure, there have been some hard moments) and I'm SO glad to see you travelling. I have a million questions about how you are able to travel with the pain. I want to hike the Himalayas but I'm worried the pain will get in the way. Are you backpacking? If so, how did you travel with a giant backpack (and the weight) on your back with all the pain?
lol all the words are so hard to say! It’s not just you. I have the sacral iliac issues and lots of lumbar issues but no HLB gene so my doctors are confused 🤷🏻♀️ Thank you for this video!! You are the best❤️
Your videos have been so helpful to me! I had severe back pain start at age 20. It took over a year for my chiro to order an MRI which did show a slightly herniated disc, but even after a year of physical therapy...the pain didn’t go away. I had flare ups where I couldn’t even walk. It was so painful I went to the ER at one point. It started as severe lower back pain and tightness that shot down my leg, but as it continued I started getting severe back pain as I slept. During my last big flare up, my chiropractor identified that the pain was coming from inflammation in my sacroiliac joint. My mid/upper back pain was getting so bad at night that I couldn’t sleep. It would wake me up consistently after 4 hours with muscles so tight and so painful I felt like I couldn’t breathe or move. They would only loosen after I got up and started moving for a couple hours. My physical therapist tried everything with me from stretches before bed, to mobilizing exercises, ice, heat, diet changes...everything. To her, the symptom of getting worse while I slept didn’t make sense...until she suggested AS. I talked to my primary care physician and she ordered a general blood test to search for inflammation. Nothing showed up out of the ordinary. I was discouraged. Not that I Wanted to have AS, but I swear - it’s the ONLY thing that makes my symptoms make sense. Mid back rigidity that gets worse with rest, and lower back inflammation that stems from my SI joint and makes walking painful. I just started researching AS again because I keep coming back to it, and when you said inflammation only shows up in 30-40% of AS people’s blood tests...I don’t know...I feel like there’s still a chance my doctor missed it. I’m just not sure how to pursue the diagnosis further. I don’t have health insurance right now due to temporary unemployment, but I also really don’t want to have to take ibuprofen EVERY night. That’s really not good for you! Any thoughts or ideas? Throw them my way!
Im glad you got a diagnosis now rather than later like many including me. I know what you mean about wishing you were feeling symptoms more during mri but actually the corner lesions called (romanus lesions) which are the edema picked up on mri are a result of past inflammation. Useally you have pain and inflammation for 7 to 10 yrs. before they are detectable. And you said syndesmophytes correctly lol. I told my Dr. for 2 1/2 yrs. I think I have AS after a diagnosis of Psoratic Arthritis and now after 18 years of chronic pain in back and multiple joints have mri proof. I hope the medication helps you and you continue to lead a happy healthy life. Thanks for sharing and I wish you the best. God Bless.
These videos have helped me so much. I am still looking for a diagnosis, it’s been over 5 years with no luck. I see a rheumatologist soon so fingers crossed!
I have been going through the testing for 4 years, its very frustrating. First I was diagnosed with frozen shoulder, then when I started losing my hair, the sent me to rheumatology found out the hair loss was autoimmune by biopsy but the blood tests for other autoimmune were negative. They said it was fibromyalgia, another misdiagnosis. I was doing yoga one day and remembered in my early 20s I was diagnosed with SI disorder, I continued to have pain in my hip but the pain did not prevent me from working, the pain in the shoulder did. I am now 42. They did an MRI and found arthritis in my neck and middle back but can't say if it autoimmune or not. I am still looking for a diagnosis, they said the arthritis is normal for aging. I was reading my chart and the doctors suggested testing for the gene hla b27 and MRI with contrast. I looked into why they would suggest these tests and found if positive it would be anyklosing spondylitis. I am scared now to set up the tests because there is no cure. However, knowing it maybe I can get pain relief. At the time they prescribe me nothing because of the opioid epidemic. In the past, when I had pain they would just give it. When the pain went away I quit taking it. Why, now its chronic, they leave me to suffer.
Great little video here, thanks for sharing part of your story! (I'll be sure to watch the other one you mentioned) I understand perfectly well everything you discussed here, as I myself have Ankylosing Spondylitis. I was diagnosed back in 1991. You're right about the various tests that are done to diagnose it; test for HLA-B27 gene, CRP and MRI. My diagnosis was based on a bone scan. There is another test doctors do to determine active arthitis, an ESR, Erythrocyte Sedimentation Rate blood test. There are a few AS groups on Facebook - I'm a part of one. Also, there are some really great videos on UA-cam put out by N.A.S.S. (National Ankylosing Spondylitis Society) - some personal spotlight stories that you might like to watch. By the way, I gave your video a thumbs up. :)
Thank you this, young woman. After almost 2 years of various doctors and neurologists discussing with me the "probablility" of me having MS, I have just this week learned that I have AS, and peripheral neuropathy. When I was told, I said, "My Brother had AS", and they looked at one another and sighed. At least I dont have to take that horrendous beta interferon anymore lol. Youre still very young, so I hope you can have a happy and active life, I thought it was probably old bastards like me who got this kind of thing, and I feel a bit less isolated now. Thanks again for sharing 💚👍🏻
Hi! I just recently found your channel and I have to thank you. I was just diagnosed at 22 but started showing signs at 13. For the longest time I thought it was something I had done (not stretching before exercise enough, not resting enough, not heating/icing etc.) The originally went to the doctor for a physical. At that physical the CRP level was 21 (normal is 0-8). They couldn’t figure out what was going on and finally sent me to a rheumatologist. After more blood tests, mri’s, and x-rays they finally diagnosed as AS. I have been having a hard time understanding why I have this chronic condition. I don’t have the gene, neither of my parents have the gene, and my 18 year old sister who also has AS doesnt have the gene. I dont have any of the other conditions that are generally linked to AS, and I never had a traumatic accident that would have triggered it. Mine is in my sacroilliac joint as well. Are there any stretching or exercises you encourage or discourage based on your experience? I am trying to find what work best for me because it is getting progressively worse. Thank you again for posting these videos. Especially because not many people know about AS.
Hi, I too was recently diagnosed with bilateral sacroiliitis I dont have the gene, neither my parents. All blood test is clean... My rheumatologist says that stress can trigger an autoimmune too. I have been having issues lately with anger, stress, hatred, anxiety. So you might wanna take are of that. I also belive I had been having too muh processed foods of red meat... so you need to cut down on starch, red meats, diary products, processed foods. Have lots of vegetables and fruits
I was diagnosed with AS 12 months ago I see the Specialist appointment every 6 months get blood work done as well the last time I saw my Specialist I got blood work done inflammation in the blood was 29 was high she said I had to do another blood work on the day after seeing the Specialist it only drop to 27
This is really helpful. My mum has AS and so does my cousin and her son. I have been having issues with my hip for years and I have had X-Rays and blood tests which came back fine so they said it would be just soft tissue 'stuff'. So I've just been ignoring it, but now I'm having more issues with other joints like my ankle and heel. I've just found out that women can present differently than men and can have it in their hips and ankles etc. I'm also struggling with fatigue. I am finally being referred to rhumatolgy. I wish that my doctor is I had known about these differences in women! I've had so much pain just walking, I'm really active go to the gym, yoga etc and have just dealt with the pain, with no medication. I don't have the diagnosis yet but I would have pursued it more if I'd known it could be that!
I'm so sorry your going through this and so young. Your video was very informative. I was recently diagnosed with AS after a bone scan. I have to get an MRI soon and my ANA has been elevated for the last 2 years. I am 58 and also have osteoporosis, was born without my thyroid have osteo-arthritis and I have an MTHFR gene mutation, ( something you should also get checked for. I have other health issues but too many to list. I have pain and swelling in my feet and hands and my lower spine. My doctor put me on Celebrex but may change it to a Biologic medicine. What do you take for pain? I'm glad your getting to travel the world. Keep us updated about your condition and show us pics of your travels.
Im 17 and I've just been diagnosed with ankylosing spondylitis...it started as immense back pain but i continued with painkillers as i thought it was normal but in November i had another flare and it got so messed up that i wasn't able to walk..my painkillers stopped working and finally we realized that it wasn't a muscle pull or something else so we went to the orthopedic...even he wasn't able to figure out my problem till the time my genetic test reports came...though the past few days have been tough but i know what I'm supposed to do and how i cn reduce the pain..however, even tday it's very difficult to get out of bed in the morning and sneezing, coughing or laughing aggravates the pain....still I'm trying my best to stay positive.
I’m so sorry to hear you’re struggling. Please don’t loose hope, I also found it hard when I was first diagnosed but I promise I lead a full and active life now. Sending so so so much love and positivity. ♥️♥️ Izzy xoxoxo
Charles Redditt aw sorry to hear you have pain in both hips! Hope you get a speedy diagnosis and are pain free soon! Good luck, wishing you all the best! x
Hello Izzy 👋 I’m following the same path as you in relation to my symptoms. My inflammation markers (CRP etc) came back as normal but it also came back that I have the HLA-B27 gene. Rheumatology NHS waiting lists at the minute are about 3 years. I am thinking about going private. Do you recommend taking a list of symptoms to a rheumatology appointment?
My Dr thinks I might have this, I get pain in my right hip ,my whole back, my neck and shoulders now too. I've noticed my neck gets very hot to the touch when it hurts. My shoulder felt like it was going to lock up on me the other day. My hands get weird sometimes, they tighten up and just seem like they don't want to work, my wrist also hurts sometimes and it gets worse when it gets real cold. I work as a kennel tech and it can be hard with the pain sometimes, one day I went home, took a nap and was not able to move after waking up. I have bladder issues almost 24/7 and for a brief period of time I couldn't tell if I needed to pee or poop, it was very frustrating
I just had my blood test done and waiting for results. I originally went for hip pain. I have hip dysplasia and apparantely I had inflammation on my lower back as well. Sacroilitis. Which explains my back pains, stiffness,tiredness and eye pain. I haven't been diagnosed yet.my father has ankylosing spondilitis so I haven't been tested for hla-b27. Can I ask how long it took for you to get diagnosed?
The statistic about CRP was really helpful to me! My biggest worry right now is that I did not have an elevated CRP so I thought that I didn't have any inflammation. That's how most doctors act. AS does seem really similar to my symptoms and every doctor just says that I just have a bad back and tell me to rest and ice. Not to say that I know have AS now but I just feel like sometimes my doctors don't want to look further and I don't want to ignore something that I don't think is right. In the end if they say that I really do just have a bad back, and I have done all that I can, that's ok. I just want to be taken seriously. Did you ever have any problems like this?
Courtney Potter Hey, I wasn’t sure what was wrong as I had never experienced / heard of AS before! Although I did go down lots of different paths (e.g. being told it was injury / related to hyper-mobility, etc. Before I was diagnosed) The most helpful thing that I did (and might be good for you to do too) was to keep a symptom diary. I took this to my GP to show them and I think this made them take me a lot more seriously as they could see a pattern (I.e. particularly bad at night) and how painful it was. In it I described what my symptoms felt like, when they occurred and if it stopped my from doing anything. When I took this to my GP he referred me to rheumatology straight away. Even if it helps your GP rule out something it could be helpful! Good luck! Izzy 💕
Doctors have to have a name for everything. Everybody is having pain in their spine and low back due to all the forced "running" in the schools for the last 35 years. Running is not a good exercise for the human upright body. It does not have the necessary shock absorption capacity. The hips get "jammed" which compresses the spine and low back.
hello, greetings from guadalajara mexico, I was diagnosed with spondylitis at 23, I take sulfazalacin and leflunomide, do you hurt your heels and ankles ??
Hi can I ask you, when you got diagnosed with AS did they do an ecg and echo on your heart to make sure you don’t have any of the heart complications? I am going to a rheumatologist this month and I’m hoping this will be something they check
I got diagnosed when I was 21 and thought you had to take medications but now I find eating plant based and getting regular adjustments from a chiropractor has extremely helped and I no longer take naproxen! Also laser therapy for deep tissue really helps with the inflammation :)
alix lawson ah thanks for sharing what works for you! I’m also plant based but haven’t really found it’s helped my symptoms unfortunately. Good luck! Xx
Hey! I hope you are doing good...Can you please help with this....I am planning to study somewhere abroad....and this is killing me....should I go or not....can I stay there alone....will I get into trouble.....I am not used to cold weather....please! Help me....what should I do?
They actually told me over the telephone which shocked me quite a bit. They followed it up with a letter which they also sent to my GP to change my medication but that didn’t arrive until a few weeks after. My fist follow up appointment was a couple of months after that. Xx
Thanks for making these videos! I'm waiting for a confirmation of my AS diagnosis and am relating so much to the things you're describing. It's amazing to see your travel vlogs and hear your AS stuff, so much respect for you! Hope your travels continue go well xx
justanotherface14 aw thank you so much! Good luck getting confirmation on your diagnosis and I hope you’re feeling better soon! I’m so glad you like the videos! That’s literally why I started making them so it makes me so happy! 🤗💕
I was diagnosed with AS probably 40 yrs. ago and again with blood tests diagnosed with AS this past Dec. (l’m now 70, and still in chronic pain, EVERYWHERE). No one knows what I’m talking about when I mention it. No dr. has “really” addressed this problem. I’ve had back surgery, and last Sept. had a pain stimulator implanted in my back. Going to a new dr this month and now doing more research on it. Should have gotten help why before now!!! Thank you for your videos.😘 Hopefully this chronic pain will lesson with proper meds and drs paying attention to what I tell them! Hopefully your videos will help others with AS, or at least be tested for it. Ty again!
Fishlips 1012 so sorry to hear about the pain you’re in and your experience. Thanks so much for sharing and I’m so glad you found the video helpful. Good luck with everything ♥️😘 xxx
I've had AS for 53 years...I guess I've proved that AS can't kill you ! Like you, I too travelled the world, backpacking with, and despite AS ..India, South America, S E Asia.
You need the right spirit... I can see you have it. Don't give up. A couple of times I did...but managed to turn it round, and still going strong!
did you develop any spinal deformity??
@@elavarasankaruna6987
Hi Elavarasan; Apparently my spine has become slightly curved from left to right, but you would never notice, and I stand up as erect as I did when I was 18. A pharmacist told me that I would start to bend forward if I lived long enough but that certainly hasn't happened yet and I'm 72 now! I think all the exercising has helped prevent this.
Tony Day happy to hear it you managed this disease this much beautifully.... actually we people need these kinda positive things to stay positive and win any kindah disease....
you should be the face of the treatment! 53 fucking years!
@@tonyday7128 sir can you provide the exercises it would be really helpful
Thank you for sharing!! Here in the US (or at least where I live in the US, a very poor state), for some reason doctors are very resistant to ordering MRI scans even for diagnostic purposes. I’ve been asking for one for 2 years and keep being told no, it’s “not medically necessary”-but they’re clearly wrong. It can be a fantastic diagnostic tool, and my hope is US doctors learn to appreciate it for that more, rather than just using it for injury care. Hearing that an MRI helped confirm your diagnosis makes me feel like I have to keep advocating for it for myself (so thank you again!), especially since in my experience doctors also rarely give official diagnosis either. I’ve been told “I think you have ankylosing spondylitis,” and then all they put in my chart is something like “inflammatory polyarthropothy.”
Hi from the US....Perhaps find a rheumatologist that can do all the testing and imaging to make a proper diagnosis. That's what I will be doing after the first of the year. All the best to you! 🌷
Thanks for sharing, its absolutely common not to have inflammatory markers elevated. I was told exactly the same by GP'S "here we your ESR, CRP, are normal " you dun have anything. Although at one stage when I had a flare up and requested blood test they were elevated!!
Unfortunately GP'S aren't as good on picking Spondyloarthritis (seronegative arthritis ) I'd even say lots of old school Rheumo as well. You'll have to fight to get the right diagnosis, otherwise it's too easy for dr's to dismiss someone's symptoms and brush them off. Are you on biologics? And if yes how is it going so far ?
Stay strong, from Australia 🇨🇰👍🏻
Hi Izzy! I'm not sure if you're still around on UA-cam but just wanted to say thank you for making these videos. I know you said in a previous vid that you just wanted to provide support to others who may be going through something similar, and I can honestly say you are making a huge difference in my life.
I have an MRI in two weeks but my rheumatologist & other specialists are almost certain I have AS. My x-ray showed extreme inflammation of both SI joints. I've never actually felt pain there though unless I lift my legs when I'm lying down (that popping noise.. haunts me). Tthey did the x-ray just in case and whoops it was there! My main symptom that started my journey was the chronic upper back pain (from neck to just below the shoulder blades) that is horrendous in the morning (feels like a metal rod has been lodged in my spine) and gets better with movement and exercise. I'm only 23 and I'm a female. I also have TOS (Thoracic Outlet Syndrome) which is where the nerves, veins and arteries between my clavicle and my first rib get squished together due to structural anomalies. This causes random shooting pains down my arm, severe weakness in muscle strength, and my blood gets cut off if I lift my arm over a certain height.
Warning: negative thoughts ahead. It's been incredibly difficult to swallow the reality that my life will not be as I planned. I spent my entire university life having fun and living the life of any twenty-something year old, and now everything looks bleak. Half of my energy goes into managing my pain and I don't even realize how dead tired I am by 3pm because my body drains itself trying to handle the pain. I have no upper body strength (how will I pick up my children when I'm older and play with them?), and the back pain can be so debilitating that sometimes all I'm able to do is lie on the floor and stare at the ceiling. I also had big plans to go to grad school and travel the world before this whole mess, and now I have anxiety about how my pain will interact with more school (more siting at a desk), and more travelling (more holding and carrying bags, more fatigue).
Seeing your videos gives me hope. You have such a positive attitude about it all (though I'm sure, there have been some hard moments) and I'm SO glad to see you travelling. I have a million questions about how you are able to travel with the pain. I want to hike the Himalayas but I'm worried the pain will get in the way. Are you backpacking? If so, how did you travel with a giant backpack (and the weight) on your back with all the pain?
you will prevail in life. Carry on with your dreams!
lol all the words are so hard to say! It’s not just you. I have the sacral iliac issues and lots of lumbar issues but no HLB gene so my doctors are confused 🤷🏻♀️
Thank you for this video!! You are the best❤️
John S Ahaha yup so hard to say! Ah have you had a referral to rheumatology? Hope you find the cause!! Good luck!
Your videos have been so helpful to me! I had severe back pain start at age 20. It took over a year for my chiro to order an MRI which did show a slightly herniated disc, but even after a year of physical therapy...the pain didn’t go away. I had flare ups where I couldn’t even walk. It was so painful I went to the ER at one point. It started as severe lower back pain and tightness that shot down my leg, but as it continued I started getting severe back pain as I slept. During my last big flare up, my chiropractor identified that the pain was coming from inflammation in my sacroiliac joint. My mid/upper back pain was getting so bad at night that I couldn’t sleep. It would wake me up consistently after 4 hours with muscles so tight and so painful I felt like I couldn’t breathe or move. They would only loosen after I got up and started moving for a couple hours. My physical therapist tried everything with me from stretches before bed, to mobilizing exercises, ice, heat, diet changes...everything. To her, the symptom of getting worse while I slept didn’t make sense...until she suggested AS. I talked to my primary care physician and she ordered a general blood test to search for inflammation. Nothing showed up out of the ordinary. I was discouraged. Not that I Wanted to have AS, but I swear - it’s the ONLY thing that makes my symptoms make sense. Mid back rigidity that gets worse with rest, and lower back inflammation that stems from my SI joint and makes walking painful. I just started researching AS again because I keep coming back to it, and when you said inflammation only shows up in 30-40% of AS people’s blood tests...I don’t know...I feel like there’s still a chance my doctor missed it. I’m just not sure how to pursue the diagnosis further. I don’t have health insurance right now due to temporary unemployment, but I also really don’t want to have to take ibuprofen EVERY night. That’s really not good for you! Any thoughts or ideas? Throw them my way!
Im glad you got a diagnosis now rather than later like many including me. I know what you mean about wishing you were feeling symptoms more during mri but actually the corner lesions called (romanus lesions) which are the edema picked up on mri are a result of past inflammation. Useally you have pain and inflammation for 7 to 10 yrs. before they are detectable. And you said syndesmophytes correctly lol. I told my Dr. for 2 1/2 yrs. I think I have AS after a diagnosis of Psoratic Arthritis and now after 18 years of chronic pain in back and multiple joints have mri proof. I hope the medication helps you and you continue to lead a happy healthy life. Thanks for sharing and I wish you the best. God Bless.
These videos have helped me so much. I am still looking for a diagnosis, it’s been over 5 years with no luck. I see a rheumatologist soon so fingers crossed!
Ah I'm so glad that they've been helpful! Good luck seeing a rheumatologist and getting a diagnosis! x
I have been going through the testing for 4 years, its very frustrating. First I was diagnosed with frozen shoulder, then when I started losing my hair, the sent me to rheumatology found out the hair loss was autoimmune by biopsy but the blood tests for other autoimmune were negative. They said it was fibromyalgia, another misdiagnosis. I was doing yoga one day and remembered in my early 20s I was diagnosed with SI disorder, I continued to have pain in my hip but the pain did not prevent me from working, the pain in the shoulder did. I am now 42. They did an MRI and found arthritis in my neck and middle back but can't say if it autoimmune or not. I am still looking for a diagnosis, they said the arthritis is normal for aging. I was reading my chart and the doctors suggested testing for the gene hla b27 and MRI with contrast. I looked into why they would suggest these tests and found if positive it would be anyklosing spondylitis. I am scared now to set up the tests because there is no cure. However, knowing it maybe I can get pain relief. At the time they prescribe me nothing because of the opioid epidemic. In the past, when I had pain they would just give it. When the pain went away I quit taking it. Why, now its chronic, they leave me to suffer.
@@rachaelpeterson1767 are you Hla B27 positive ? .... jus avoid starch foods, processed foods, diary foods and red meats.... no vinegar too
@@Beamlight7 I got that one figured out and I am healed of all my chronic pain
You are going to the right doctors. I can help you, I figured out a secret to true healing
Great little video here, thanks for sharing part of your story! (I'll be sure to watch the other one you mentioned) I understand perfectly well everything you discussed here, as I myself have Ankylosing Spondylitis. I was diagnosed back in 1991. You're right about the various tests that are done to diagnose it; test for HLA-B27 gene, CRP and MRI. My diagnosis was based on a bone scan. There is another test doctors do to determine active arthitis, an ESR, Erythrocyte Sedimentation Rate blood test. There are a few AS groups on Facebook - I'm a part of one. Also, there are some really great videos on UA-cam put out by N.A.S.S. (National Ankylosing Spondylitis Society) - some personal spotlight stories that you might like to watch. By the way, I gave your video a thumbs up. :)
This was so helpful Izzy. Thanks so much for sharing 💗🙏
Thank you this, young woman. After almost 2 years of various doctors and neurologists discussing with me the "probablility" of me having MS, I have just this week learned that I have AS, and peripheral neuropathy. When I was told, I said, "My Brother had AS", and they looked at one another and sighed. At least I dont have to take that horrendous beta interferon anymore lol. Youre still very young, so I hope you can have a happy and active life, I thought it was probably old bastards like me who got this kind of thing, and I feel a bit less isolated now. Thanks again for sharing 💚👍🏻
Hi! I just recently found your channel and I have to thank you. I was just diagnosed at 22 but started showing signs at 13. For the longest time I thought it was something I had done (not stretching before exercise enough, not resting enough, not heating/icing etc.)
The originally went to the doctor for a physical. At that physical the CRP level was 21 (normal is 0-8). They couldn’t figure out what was going on and finally sent me to a rheumatologist.
After more blood tests, mri’s, and x-rays they finally diagnosed as AS.
I have been having a hard time understanding why I have this chronic condition. I don’t have the gene, neither of my parents have the gene, and my 18 year old sister who also has AS doesnt have the gene. I dont have any of the other conditions that are generally linked to AS, and I never had a traumatic accident that would have triggered it.
Mine is in my sacroilliac joint as well. Are there any stretching or exercises you encourage or discourage based on your experience? I am trying to find what work best for me because it is getting progressively worse.
Thank you again for posting these videos. Especially because not many people know about AS.
Hi, I too was recently diagnosed with bilateral sacroiliitis I dont have the gene, neither my parents. All blood test is clean... My rheumatologist says that stress can trigger an autoimmune too. I have been having issues lately with anger, stress, hatred, anxiety. So you might wanna take are of that. I also belive I had been having too muh processed foods of red meat... so you need to cut down on starch, red meats, diary products, processed foods. Have lots of vegetables and fruits
I was diagnosed with AS 12 months ago I see the Specialist appointment every 6 months get blood work done as well the last time I saw my Specialist I got blood work done inflammation in the blood was 29 was high she said I had to do another blood work on the day after seeing the Specialist it only drop to 27
This is really helpful. My mum has AS and so does my cousin and her son. I have been having issues with my hip for years and I have had X-Rays and blood tests which came back fine so they said it would be just soft tissue 'stuff'. So I've just been ignoring it, but now I'm having more issues with other joints like my ankle and heel. I've just found out that women can present differently than men and can have it in their hips and ankles etc. I'm also struggling with fatigue. I am finally being referred to rhumatolgy. I wish that my doctor is I had known about these differences in women! I've had so much pain just walking, I'm really active go to the gym, yoga etc and have just dealt with the pain, with no medication. I don't have the diagnosis yet but I would have pursued it more if I'd known it could be that!
Laura Jaine aw I’m so glad that this was helpful!! ♥️ good luck getting a diagnosis & always here! Xx
I'm so sorry your going through this and so young. Your video was very informative. I was recently diagnosed with AS after a bone scan. I have to get an MRI soon and my ANA has been elevated for the last 2 years. I am 58 and also have osteoporosis, was born without my thyroid have osteo-arthritis and I have an MTHFR gene mutation, ( something you should also get checked for. I have other health issues but too many to list. I have pain and swelling in my feet and hands and my lower spine. My doctor put me on Celebrex but may change it to a Biologic medicine. What do you take for pain? I'm glad your getting to travel the world. Keep us updated about your condition and show us pics of your travels.
Im 17 and I've just been diagnosed with ankylosing spondylitis...it started as immense back pain but i continued with painkillers as i thought it was normal but in November i had another flare and it got so messed up that i wasn't able to walk..my painkillers stopped working and finally we realized that it wasn't a muscle pull or something else so we went to the orthopedic...even he wasn't able to figure out my problem till the time my genetic test reports came...though the past few days have been tough but i know what I'm supposed to do and how i cn reduce the pain..however, even tday it's very difficult to get out of bed in the morning and sneezing, coughing or laughing aggravates the pain....still I'm trying my best to stay positive.
I’m so sorry to hear you’re struggling. Please don’t loose hope, I also found it hard when I was first diagnosed but I promise I lead a full and active life now. Sending so so so much love and positivity. ♥️♥️ Izzy xoxoxo
Thank you for this. It took 13 years before I got my diagnosis.
I m HLA b27 positive 3years please help me
I’m so sorry to hear it took so long!
it s always atypical and kinda rare for us women with ASPA
Thanks for the video. Just got a positive HLA B27 result at age 51. Your description of pain in your right hip matches mine. both hips for me tho :-(
Charles Redditt aw sorry to hear you have pain in both hips! Hope you get a speedy diagnosis and are pain free soon! Good luck, wishing you all the best! x
Appreciate the vids, just got diagnosed at 27
Sorry to hear that man. Hope that you’re doing okay xx
Do not eat gluten.Allessio Fassano MD has numerous videos about why.
Hello Izzy 👋 I’m following the same path as you in relation to my symptoms. My inflammation markers (CRP etc) came back as normal but it also came back that I have the HLA-B27 gene. Rheumatology NHS waiting lists at the minute are about 3 years. I am thinking about going private. Do you recommend taking a list of symptoms to a rheumatology appointment?
How did you get a doctor's appointment?
My Dr thinks I might have this, I get pain in my right hip ,my whole back, my neck and shoulders now too. I've noticed my neck gets very hot to the touch when it hurts. My shoulder felt like it was going to lock up on me the other day. My hands get weird sometimes, they tighten up and just seem like they don't want to work, my wrist also hurts sometimes and it gets worse when it gets real cold. I work as a kennel tech and it can be hard with the pain sometimes, one day I went home, took a nap and was not able to move after waking up. I have bladder issues almost 24/7 and for a brief period of time I couldn't tell if I needed to pee or poop, it was very frustrating
Does anybody diagnosed with this have symptoms like this?
مرحبا انا من العراق مصاب بمرض التهاب الفقار الاصق وسوفان وطقطقه الركبتين والحوض ارجو المساعده في العلاج البايلوجي
could you maybe share your sympton tracker? i have diffuculties keeping it neat and organized. or do you have tips?
I just had my blood test done and waiting for results. I originally went for hip pain. I have hip dysplasia and apparantely I had inflammation on my lower back as well. Sacroilitis. Which explains my back pains, stiffness,tiredness and eye pain. I haven't been diagnosed yet.my father has ankylosing spondilitis so I haven't been tested for hla-b27. Can I ask how long it took for you to get diagnosed?
Very helpful..i am currently..waiting for blood test results.
The statistic about CRP was really helpful to me! My biggest worry right now is that I did not have an elevated CRP so I thought that I didn't have any inflammation. That's how most doctors act. AS does seem really similar to my symptoms and every doctor just says that I just have a bad back and tell me to rest and ice. Not to say that I know have AS now but I just feel like sometimes my doctors don't want to look further and I don't want to ignore something that I don't think is right. In the end if they say that I really do just have a bad back, and I have done all that I can, that's ok. I just want to be taken seriously. Did you ever have any problems like this?
Courtney Potter Hey, I wasn’t sure what was wrong as I had never experienced / heard of AS before! Although I did go down lots of different paths (e.g. being told it was injury / related to hyper-mobility, etc. Before I was diagnosed)
The most helpful thing that I did (and might be good for you to do too) was to keep a symptom diary. I took this to my GP to show them and I think this made them take me a lot more seriously as they could see a pattern (I.e. particularly bad at night) and how painful it was. In it I described what my symptoms felt like, when they occurred and if it stopped my from doing anything. When I took this to my GP he referred me to rheumatology straight away. Even if it helps your GP rule out something it could be helpful!
Good luck! Izzy 💕
Call me sister 8420615500.. India..... I have surprised treatment for this deasease... May God bless you
@@fullcurecaseankylosingspon5037 me india rajasthan se hu a sister aapk pass ankolising spanodylities ka treatment hae ?
crp are generally negative or really low with as
Doctors have to have a name for everything. Everybody is having pain in their spine and low back due to all the forced "running" in the schools for the last 35 years. Running is not a good exercise for the human upright body. It does not have the necessary shock absorption capacity. The hips get "jammed" which compresses the spine and low back.
I have also anklosing syponditis
hello, greetings from guadalajara mexico, I was diagnosed with spondylitis at 23, I take sulfazalacin and leflunomide, do you hurt your heels and ankles ??
Call me brother... 8420615500.. India.... I have complete treatment.... May God bless you
My foot is very painful in the heel. It is associated with AS. Enthesitis or planter fasciitis are two common problems with feet n ankles
I’m in a similar situation but just wanted to find out what do you do for full time work with this condition
Hi can I ask you, when you got diagnosed with AS did they do an ecg and echo on your heart to make sure you don’t have any of the heart complications? I am going to a rheumatologist this month and I’m hoping this will be something they check
Plz call me sister.... 8420615500 india.... I have complete treatment..... Treatment through ruhani ilaaz
I got diagnosed when I was 21 and thought you had to take medications but now I find eating plant based and getting regular adjustments from a chiropractor has extremely helped and I no longer take naproxen! Also laser therapy for deep tissue really helps with the inflammation :)
alix lawson ah thanks for sharing what works for you! I’m also plant based but haven’t really found it’s helped my symptoms unfortunately. Good luck! Xx
alix lawson how old are you now?
Emilly Thomas 25
Where is the symptoms video?
Hey! I hope you are doing good...Can you please help with this....I am planning to study somewhere abroad....and this is killing me....should I go or not....can I stay there alone....will I get into trouble.....I am not used to cold weather....please! Help me....what should I do?
Thank you ❤️❤️❤️
Did they first tell u by letter or did they ask you in?
They actually told me over the telephone which shocked me quite a bit. They followed it up with a letter which they also sent to my GP to change my medication but that didn’t arrive until a few weeks after. My fist follow up appointment was a couple of months after that. Xx
Madam plz make video with subtitles
Are u alive this time? Plz rply...
WHAT MEDS. R U TAKING...BIOLOGICS?
charlie opie Hi, no not biologics at the moment. Currently on a medicine called Etoricoxib 🤗
I'm on biologics Charlie opie, I started on Cimzia and now I'm on Humira x
@@ThisIzzTheLife Hi, are you still on it? Etoricoxib is not fda approved, that why I'm not keen on using it....
Just got a referral but I am hlab27 positive so thanks for sharing your journey with this 👍🏻
Flares