First în women spondylarthritis ( not spondylithis ankylozant) is different as manifestation.. is nit with fusion od verthebres.. this is explenation for very late diagnose .. and issues are at sacroiliac and fusion is very rare!! Is a great confusion. În women is different...I saw thousand cases în 60 years...
@gemmagroves38252 ай бұрын
I had 24 miscarriages always 6-8 weeks and also gave birth to a little boy at 23 weeks due to birth defects. Also pcos
@user-sg9cg3dv6l3 ай бұрын
Thank you for sharing your experience. All too similar to mine.
@rebeccakilgore73863 ай бұрын
How is it that you’re video along with one other is the only AS you can find on live real camera? Have you had trouble with others being honest about their experience.
@rebeccakilgore73863 ай бұрын
It’s been so long what is your view now? I agree with you entirely here and I feel many others are relating. These medications and the low probability that it helps AS patients is real. And the side effects don’t seem worth what we already have that is awful enough.
@caminoabienestar71315 ай бұрын
Try not to use corticoids i know its tempting for they relieve the stiffness but like my nutritional therapy said " corticoids are bread for today hunger for tomorrow" Muscle relaxers are better like chondriacs ect
@caminoabienestar71315 ай бұрын
I have AS , I've researched most autoimmune are conected to leaky gut and lyphosytes like round up
@Vixinaful5 ай бұрын
Im in sweden and its the same here. They send people with cancer home with pain medication over the counter and everything they dont know what is, they send you to the psychiatry for.
@Vixinaful5 ай бұрын
Can the pain be rid with muscle relaxers if injected by a doctor?
@Vixinaful5 ай бұрын
How do you survive the nights? I suspect I have this and the nights are so painful I panic. My joints also have that poping sound now, all over and Im afraid to move as normal. I dont know if its AS, the emdical care insists its psychological and refuses to investigate. I'm so scared..
@rebeccakilgore73863 ай бұрын
See rheumatologist and get clinical and genetic testing
@lisajones61076 ай бұрын
I hope that you are seeing a therapist. You can truly be happy facing a hopeless situation in long term chronic pain. (I see it and feel it every day!) My partner has RA, lupus, diabetes and antiphospholipid disease yet she is still a generally happy person. Her leg was amputated last May and she is constantly in and out of the hospital. I have chronic pain and am am still waiting for someone to figure out what going on with me. I hope that you can find peace within yourself! Know that many face critical issues each day and each handle it their way. Thanks for your information on AS.
@pottsofroses16 ай бұрын
You're a very brave girl thank you for sharing.
@rebeccakilgore73863 ай бұрын
Are you not willing to share, do you have AS? I am trying to find those whom have it as I do. And crazy but I can’t find anything within the last year or two. It’s very old and I am so thankful for that but why are other people not talking about this.
@fineartlifestyling7 ай бұрын
Oh this resonates with me! I have been going through this for years, have been bouncing around specialists and GP’s for years in the medical system. I completely lost faith in doctors in Canada and from what I hear from Americans, it’s pretty darned close! Dismissive, arrogant, narcissistic, self absorbed that’s sadly the usual experience 8 out of 10 times for me! The gaslighting about it’s all in your head seems to be their most basic script that rolls off the tongue. I used to say these docs are all coming out of some crooked factory where they are made of a broken mould! No one has pride in their field anymore, highly incompetent, and negligent! It took me two years to see a doctor for Ehlers Danlos Syndrome screening which happened to be negative. After that I saw the 5th endocrinologist (yes I have many layers of problems which makes diagnosing that much more complicated) and despite having extremely strange blood work showing extremely low cortisol, she dismissed it and discharged me from her care! I have had elevated platelet and lymphocytes for 5 years, they tell you it’s all okay! I have to press for every test, I have to constantly research my own symptoms to try to find answers for my condition, I have to become my own advocate and a detective. If it wasn’t for the internet and Reddit, the breadcrumbs sprinkled about on forums and chat group discussion leads me to spondylitis! And I wasn’t even on an arthritis chat! I was on a hip, SI joint and hip impingement, labral tear chat. Why? Because the physiatrist who was a young arrogant prick wasn’t listening to me and just gave me a blanket diagnosis of fibromyalgia (which i extremely disagree with) and hip labral tear. Well it’s not!
@elishanolan Жыл бұрын
Well said, vikki!! I'm glad I stumbled across your video. ❤
@florabraswell9744 Жыл бұрын
Why do we have such a hard time getting diagnosed? Maybe it’s because there is no doctor wanting to deal with the Spine so we have to suffer because of it !
@davyg8864 Жыл бұрын
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 and hand 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 and right down my left leg, 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, if i have over done my upper body is tight and i have difficuilty breathing. After work i feel as though i have been hit by bus, my heels are so so sore. 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. Does anyone ever expierence pain i there achilles and calfs. Im am so depressed every night i say to myself maybe tomorrow i will feel better, i have been living like this for years now wondering if the next day will be better and it never is. I try to explain to people how sore and fatigued i am but its like they just dont believe me or understand how i am feeling. Often feel like giving up, if it wasnt for my family i would just give up.ARE ALL THESE SYMPTOMS SIMILAR TO HOW OTHER PEOPLE FEEL????
@ashleystipes11 Жыл бұрын
😳🥺you're story sounds what I've been going thru. I'm at my 2nd neurologist with no diagnosis. I'm so sorry beautiful no one deserves it.
@ItsJustMe-nq1dg Жыл бұрын
Thank you so much for your story!
@kimberlypuravida5690 Жыл бұрын
What happened to the channel and these women?
@florabraswell84232 жыл бұрын
You sound like me , l understand completely, l have had pain all my life , God Bless you , l have had to use mind over matter ,, l am 74 years old changing doctors over over over ,l found another doctor again hopefully he will listen to me the pain is unbearable! thank You for your time sharing videos about Anklelosis Spondylitis,💁♀️🙏💕
@bssandhu-jd7gg2 жыл бұрын
I don't want to live anymore spondylitis ended my life
@maryjazzar67962 жыл бұрын
Thanks for your story!
@tonymaurice41572 жыл бұрын
Raw vegan diet!
@theviolentbreed94632 жыл бұрын
Nobody gives a shit about us unfortunately. We ARE angry. Nobody can place a reason for this disease. I honestly think it’s a vaccination thing we went through as children. It’s rather coincidental that we’re all about the same age. Read between the lines, we were lab rats, just like this current jab
@StephanieSoressi2 жыл бұрын
Cheers, Steffi. Thanks for sharing -- we have much in common. I'm hoping that you are still around & I'm about to check if you've made updates...
@theviolentbreed94632 жыл бұрын
Hi Vikki! God bless you for your struggle. I thought I was the only one. It’s so hard to relay how awful AS is. I too had to make videos to help describe this horrible journey. Here’s a link if anyone is interested in my fight. Keep up the fight Vikki! We are AS warriors!!!!
@theviolentbreed94632 жыл бұрын
Link: kzread.info/dash/bejne/god5y8yAfNOvk9o.html
@lauraweaver822 жыл бұрын
Took me little over 15 years to finally be diagnosed with AS. I was dismissed by multiple family doctors when I requested referrals to see a rheumatologist for the last 5 years of that 15 years trying to figure it out. Took me a long time to realize it was some kind of arthritis. But, they kept telling me to do physical therapy and yoga and that I didn’t have anything wrong. Went to a chiropractor to get adjusted for the first time and she wanted x rays before the consult. First words out of her mouth was “ I can see from the X-rays that your have arthritis”
@sarahbell59312 ай бұрын
Yep! Took me 20+ years!! Looking back, there were SOO many red flags, but of course nobody put the pieces together. I got diagnosed a decade ago, just for them to retract the diagnosis because I didn’t have the HLB gene or whatever it is. AND my first X-ray was positive for AS, as they did the proper amount of views needed to properly see AS changes. However, my MRI was mostly fine, as I wasn’t experiencing an active flare by then. I was actually doing really good in comparison to my usual. So they re did the X-ray with only 2 views. My current rheum was PISSED as she went through my history and all the time the ball got dropped. I only even got my diagnosis because I kept pushing my PCP that something more was wrong (was diagnosed with fibro all this time, despite NOT having muscle pain, but rather JOINT and back pain 😔) How in the word is this able to happen??
@itsmixedoyyye24323 жыл бұрын
I came to know that I have AS Now On NSAIDs and still have pain
@patkolakowski49053 жыл бұрын
I was just diagnosed and can relate to everything you have said. Thanks for taking the time to make this.
@danplugaru81873 жыл бұрын
Tell me please how are your inflamatory analisis? I mean vsh and pcr( protein c reactive) i bet you have no big inflamation in blood although you accuse pains....please respond me to tell you what i believe you have ....
@danplugaru81873 жыл бұрын
Blood test of inflamation is not high....important is how your x-ray are !! I have SA for 50 years my opinion you have not SA axiale...only if appears in x-ray is SA ....believe me !! Possible o form of artritis... make investigation if any infection !! If it were SA was stiffness at spine and visible on x-rays......
@user-qj6sx1tv8w3 жыл бұрын
Your story is so very similar to mine, with the exception that I am serum negative. This made my eventual diagnosis even harder to get.
@ulsterprodspb3 жыл бұрын
Hope this helps someone out there with A.S I’ve had different mattresses in my life including posturepedic ones, recently I bought a different mattress as I was in a lot of pain.it was mlily premier 2000 memory foam,,, I always lie on my stomach so it took a bit of getting used to my shoulders sink in to it so now I’m sleeping all through the night.there’s different ones like Emma /tempur you never no
@ulsterprodspb3 жыл бұрын
Yeh girl we know what pain is but we just get on we it .it’s painful as shit the older you get .
@magicalindigoadult38383 жыл бұрын
Us this cervical spondylosis why can’t I have videos on it it’s giving me head pain all day
@lestersandoval29753 жыл бұрын
the fatigue has gotten worse since i tried biologics
@AnkylosingSpondylitisMan3 жыл бұрын
Thank you for sharing. Stay strong.
@rebekahlafever3334 жыл бұрын
Thank u ! I feel less alone. ur story is so much like my story! I can't stop wondering What Marly looks like? She provided some much needed comic relief! 💚
@cindyski44134 жыл бұрын
I have herniated discs in the neck and lower back. Now going through peri menopause. While having all this stiffness on my back. The neck pain comes and goes. So I sound like a crazy 40 year old that’s always complaining about some body ache. Yes horrible stiffness. Struggle to desire to do anything.
@gypsyman19674 жыл бұрын
Looking for answers. I had a back injury 6 months ago and it's not getting better. Neurosurgeon says oh there's nothing wrong, I've had a MRI that the report says sever chronic enthesopathy throughout the entire spine. Ok what is this and why did my Dr not mention it. I dig further and so some googling and it comes up with enthesopathy of the spine as being related to AS. Finding a doctor who will listen has become very much a futile effort. I'm in pain constantly. I have IBS, brain fog, extreme fatigue. I use a walker to help keep from falling. I am depressed,.so much so my new GP says I need to see a shrink.. I just want answers and not to hurt
@Beamlight73 жыл бұрын
Why dont you try AIP diet... watch videos of Dr Terry wahls who got herself healed from autoimmune
@daveglassman47794 жыл бұрын
I'm glad to have heard your story here. I'll be sure to check out the links you mentioned. I was diagnosed with AS in 1990... my regular doctor - a GP, was the one who diagnosed me. He first did a complete blood panel, and I showed up pos/neg for RA factor (rheumatoid arthritis). Then he ordered a bone scan. It was the bone scan that showed the inflammation in my SI joint and lower lumbar. The doctor also ran a test for the genetic marker - HLAB27, which was positive. So, the diagnosis was clear; Ankylosing Spondylitis. I was surprised that a GP was able to make the diagnosis. What a wonderful doctor! I was put on prednisone, and then after that, a host of other meds. I now take naproxen, which seems very efficacious. I can relate to the daily pain and fatigue...I fight that battle, too. I also am part of a support group for AS on Facebook. It's nice to know I'm not alone in this!
@raininfilth4 жыл бұрын
This sounds like my story thru and thru. I finally was just diagnosed a few days ago. After a positive HLAB27. I honestly do not even believe them. As its been hundreds of doctors over the years. Ive even tried to get my primary 3 years ago to look into AS, and my surgeon last year after spine surgery. Because my pain was still there, months PO. I am not sure I believe this. Because if its true. I cant stop running all the shit doctors in my head who dismissed my pain, treated me like a drug seeker, treated me like I was imagining it, like I was just "sensitive". Like It was purely a slipped disc, then 2 discs, then 3 and a tear, then ruptures. Then Im over sensitization and im in a pain loop. No, theres something actively causing my pain and its getting worse. I continued to state this to whom ever would listen. Ive been ready to write my WILL the last couple of months because the pain has gotten so bad. So to be just diagnosed so quickly and randomly because a NEW PT sent me to a Rheaumatologist after meeting me for 5 mins.
@DirtyBev4 жыл бұрын
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
@DirtyBev4 жыл бұрын
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
@DirtyBev4 жыл бұрын
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
@DirtyBev4 жыл бұрын
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
@susanharwood46754 жыл бұрын
i am so wth this woman x
@ishouldbesleeping13544 жыл бұрын
I’m in SO MUCH pain this year. I’m unsure how long I can work standing all day, but how will I pay my bills, if I don’t. I’m miserable and people close to me notice the change and increased irritability. No pain pills in this post opioid prohibition and I can’t take anti inflammatories because of GI bleeds. I’m in serious despair. It’s all over me ( feet, achilles, ankles, knees, Sacral, lumbar, cervix, shoulder, elbows, wrists, hands) I am positive for the genetic 27 marker. I had Breast cancer this time last year. This is FAR worse and long lasting, getting worse each year.
@wanphen4 жыл бұрын
Take a look at The Low/No Starch Diet for Ankylosing Spondylitis on face book, over 8000 AS+ people treating AS with fantastic results, I am one of them and I have my life back.
@outlawco602 жыл бұрын
Are u on biologics ...how r u feeling today?
@zara123456789024 жыл бұрын
I don't think I know anyone with AS who was diagnosed quickly. Especially those of us that don't have the gene for it. That said I wonder if you worry about progression of the disease without treatment? I've been on almost every Biologic and have had massive allergic reactions to most. I'm also alergic to NSAID'S and the steroids have been used too often for them to work anymore. That's also something they wont always tell you, the steroids wont work forever. Currently I am being treated with Opioids and Humira. The Humira has been stop and go for over a year due to infections. I'm on weekly injections and now on week 5. I've only had one flare and it only lasted 48 hours. That said I am seeing progression of the disease. My rib cage, neck, shoulder and spine movement is all down. So that is why I have chosen the biologics. I have 3 kids to raise and I can't afford to be in a wheelchair or have a machine breath for me or pump my heart. We all have to make the best choice for our lives. I have to slow down the progression and I'll do anything to make that happen. Also I'm on an antiinflamatory diet/a stricter version of the Fodmap diet. It really does help, but it's definitely not for everyone. Good health to you and yours!
@teresawilkinson17752 жыл бұрын
What's the food plan your on please been told nothing
@zara123456789022 жыл бұрын
@@teresawilkinson1775 look up the FodMap diet, but I also eliminated fatty meats, all nightshades, gluten and dairy. It's a very Asian diet.
@rohinimitra35594 жыл бұрын
You are walking so good I can't walk properly bcoz of groin and lower back pain
@mrsjohnson17434 жыл бұрын
Yeah, the rheumatologist I first had didn't like me anymore after I researched and decided not to take the drugs he prescribed. Some of the men doctors really don’t like it when female patients don’t follow their directions. I changed my diet, and found a new rheumatologist. She respected that I didn’t want to take the drugs but still helped me.
@teresawilkinson17752 жыл бұрын
Can u help me by telling me what u eat and how it helps please
@mrsjohnson17434 жыл бұрын
Long-term, chronic pain will mess with your head, big time.
@tonyday71284 жыл бұрын
You're right. I've had AS for 54 years now. It's been a long haul. It defines the person I am, for good or bad. If I was 'cured' I think my mind would reinvent it. AS and me are now the same thing. But I never give up, or maybe I just don't know when I'm beaten.. read it either way. Maybe I'm presenting a rather bleak view of AS but there is definitely an upbeat side. It's focused my mind to what's important in life and concentrate on skills that I am able to exploit. It's also given me a better appreciation and compassion for others who are suffering more. I hope this helps, so good luck and don't give up!
Пікірлер
First în women spondylarthritis ( not spondylithis ankylozant) is different as manifestation.. is nit with fusion od verthebres.. this is explenation for very late diagnose .. and issues are at sacroiliac and fusion is very rare!! Is a great confusion. În women is different...I saw thousand cases în 60 years...
I had 24 miscarriages always 6-8 weeks and also gave birth to a little boy at 23 weeks due to birth defects. Also pcos
Thank you for sharing your experience. All too similar to mine.
How is it that you’re video along with one other is the only AS you can find on live real camera? Have you had trouble with others being honest about their experience.
It’s been so long what is your view now? I agree with you entirely here and I feel many others are relating. These medications and the low probability that it helps AS patients is real. And the side effects don’t seem worth what we already have that is awful enough.
Try not to use corticoids i know its tempting for they relieve the stiffness but like my nutritional therapy said " corticoids are bread for today hunger for tomorrow" Muscle relaxers are better like chondriacs ect
I have AS , I've researched most autoimmune are conected to leaky gut and lyphosytes like round up
Im in sweden and its the same here. They send people with cancer home with pain medication over the counter and everything they dont know what is, they send you to the psychiatry for.
Can the pain be rid with muscle relaxers if injected by a doctor?
How do you survive the nights? I suspect I have this and the nights are so painful I panic. My joints also have that poping sound now, all over and Im afraid to move as normal. I dont know if its AS, the emdical care insists its psychological and refuses to investigate. I'm so scared..
See rheumatologist and get clinical and genetic testing
I hope that you are seeing a therapist. You can truly be happy facing a hopeless situation in long term chronic pain. (I see it and feel it every day!) My partner has RA, lupus, diabetes and antiphospholipid disease yet she is still a generally happy person. Her leg was amputated last May and she is constantly in and out of the hospital. I have chronic pain and am am still waiting for someone to figure out what going on with me. I hope that you can find peace within yourself! Know that many face critical issues each day and each handle it their way. Thanks for your information on AS.
You're a very brave girl thank you for sharing.
Are you not willing to share, do you have AS? I am trying to find those whom have it as I do. And crazy but I can’t find anything within the last year or two. It’s very old and I am so thankful for that but why are other people not talking about this.
Oh this resonates with me! I have been going through this for years, have been bouncing around specialists and GP’s for years in the medical system. I completely lost faith in doctors in Canada and from what I hear from Americans, it’s pretty darned close! Dismissive, arrogant, narcissistic, self absorbed that’s sadly the usual experience 8 out of 10 times for me! The gaslighting about it’s all in your head seems to be their most basic script that rolls off the tongue. I used to say these docs are all coming out of some crooked factory where they are made of a broken mould! No one has pride in their field anymore, highly incompetent, and negligent! It took me two years to see a doctor for Ehlers Danlos Syndrome screening which happened to be negative. After that I saw the 5th endocrinologist (yes I have many layers of problems which makes diagnosing that much more complicated) and despite having extremely strange blood work showing extremely low cortisol, she dismissed it and discharged me from her care! I have had elevated platelet and lymphocytes for 5 years, they tell you it’s all okay! I have to press for every test, I have to constantly research my own symptoms to try to find answers for my condition, I have to become my own advocate and a detective. If it wasn’t for the internet and Reddit, the breadcrumbs sprinkled about on forums and chat group discussion leads me to spondylitis! And I wasn’t even on an arthritis chat! I was on a hip, SI joint and hip impingement, labral tear chat. Why? Because the physiatrist who was a young arrogant prick wasn’t listening to me and just gave me a blanket diagnosis of fibromyalgia (which i extremely disagree with) and hip labral tear. Well it’s not!
Well said, vikki!! I'm glad I stumbled across your video. ❤
Why do we have such a hard time getting diagnosed? Maybe it’s because there is no doctor wanting to deal with the Spine so we have to suffer because of it !
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 and hand 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 and right down my left leg, 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, if i have over done my upper body is tight and i have difficuilty breathing. After work i feel as though i have been hit by bus, my heels are so so sore. 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. Does anyone ever expierence pain i there achilles and calfs. Im am so depressed every night i say to myself maybe tomorrow i will feel better, i have been living like this for years now wondering if the next day will be better and it never is. I try to explain to people how sore and fatigued i am but its like they just dont believe me or understand how i am feeling. Often feel like giving up, if it wasnt for my family i would just give up.ARE ALL THESE SYMPTOMS SIMILAR TO HOW OTHER PEOPLE FEEL????
😳🥺you're story sounds what I've been going thru. I'm at my 2nd neurologist with no diagnosis. I'm so sorry beautiful no one deserves it.
Thank you so much for your story!
What happened to the channel and these women?
You sound like me , l understand completely, l have had pain all my life , God Bless you , l have had to use mind over matter ,, l am 74 years old changing doctors over over over ,l found another doctor again hopefully he will listen to me the pain is unbearable! thank You for your time sharing videos about Anklelosis Spondylitis,💁♀️🙏💕
I don't want to live anymore spondylitis ended my life
Thanks for your story!
Raw vegan diet!
Nobody gives a shit about us unfortunately. We ARE angry. Nobody can place a reason for this disease. I honestly think it’s a vaccination thing we went through as children. It’s rather coincidental that we’re all about the same age. Read between the lines, we were lab rats, just like this current jab
Cheers, Steffi. Thanks for sharing -- we have much in common. I'm hoping that you are still around & I'm about to check if you've made updates...
Hi Vikki! God bless you for your struggle. I thought I was the only one. It’s so hard to relay how awful AS is. I too had to make videos to help describe this horrible journey. Here’s a link if anyone is interested in my fight. Keep up the fight Vikki! We are AS warriors!!!!
Link: kzread.info/dash/bejne/god5y8yAfNOvk9o.html
Took me little over 15 years to finally be diagnosed with AS. I was dismissed by multiple family doctors when I requested referrals to see a rheumatologist for the last 5 years of that 15 years trying to figure it out. Took me a long time to realize it was some kind of arthritis. But, they kept telling me to do physical therapy and yoga and that I didn’t have anything wrong. Went to a chiropractor to get adjusted for the first time and she wanted x rays before the consult. First words out of her mouth was “ I can see from the X-rays that your have arthritis”
Yep! Took me 20+ years!! Looking back, there were SOO many red flags, but of course nobody put the pieces together. I got diagnosed a decade ago, just for them to retract the diagnosis because I didn’t have the HLB gene or whatever it is. AND my first X-ray was positive for AS, as they did the proper amount of views needed to properly see AS changes. However, my MRI was mostly fine, as I wasn’t experiencing an active flare by then. I was actually doing really good in comparison to my usual. So they re did the X-ray with only 2 views. My current rheum was PISSED as she went through my history and all the time the ball got dropped. I only even got my diagnosis because I kept pushing my PCP that something more was wrong (was diagnosed with fibro all this time, despite NOT having muscle pain, but rather JOINT and back pain 😔) How in the word is this able to happen??
I came to know that I have AS Now On NSAIDs and still have pain
I was just diagnosed and can relate to everything you have said. Thanks for taking the time to make this.
Tell me please how are your inflamatory analisis? I mean vsh and pcr( protein c reactive) i bet you have no big inflamation in blood although you accuse pains....please respond me to tell you what i believe you have ....
Blood test of inflamation is not high....important is how your x-ray are !! I have SA for 50 years my opinion you have not SA axiale...only if appears in x-ray is SA ....believe me !! Possible o form of artritis... make investigation if any infection !! If it were SA was stiffness at spine and visible on x-rays......
Your story is so very similar to mine, with the exception that I am serum negative. This made my eventual diagnosis even harder to get.
Hope this helps someone out there with A.S I’ve had different mattresses in my life including posturepedic ones, recently I bought a different mattress as I was in a lot of pain.it was mlily premier 2000 memory foam,,, I always lie on my stomach so it took a bit of getting used to my shoulders sink in to it so now I’m sleeping all through the night.there’s different ones like Emma /tempur you never no
Yeh girl we know what pain is but we just get on we it .it’s painful as shit the older you get .
Us this cervical spondylosis why can’t I have videos on it it’s giving me head pain all day
the fatigue has gotten worse since i tried biologics
Thank you for sharing. Stay strong.
Thank u ! I feel less alone. ur story is so much like my story! I can't stop wondering What Marly looks like? She provided some much needed comic relief! 💚
I have herniated discs in the neck and lower back. Now going through peri menopause. While having all this stiffness on my back. The neck pain comes and goes. So I sound like a crazy 40 year old that’s always complaining about some body ache. Yes horrible stiffness. Struggle to desire to do anything.
Looking for answers. I had a back injury 6 months ago and it's not getting better. Neurosurgeon says oh there's nothing wrong, I've had a MRI that the report says sever chronic enthesopathy throughout the entire spine. Ok what is this and why did my Dr not mention it. I dig further and so some googling and it comes up with enthesopathy of the spine as being related to AS. Finding a doctor who will listen has become very much a futile effort. I'm in pain constantly. I have IBS, brain fog, extreme fatigue. I use a walker to help keep from falling. I am depressed,.so much so my new GP says I need to see a shrink.. I just want answers and not to hurt
Why dont you try AIP diet... watch videos of Dr Terry wahls who got herself healed from autoimmune
I'm glad to have heard your story here. I'll be sure to check out the links you mentioned. I was diagnosed with AS in 1990... my regular doctor - a GP, was the one who diagnosed me. He first did a complete blood panel, and I showed up pos/neg for RA factor (rheumatoid arthritis). Then he ordered a bone scan. It was the bone scan that showed the inflammation in my SI joint and lower lumbar. The doctor also ran a test for the genetic marker - HLAB27, which was positive. So, the diagnosis was clear; Ankylosing Spondylitis. I was surprised that a GP was able to make the diagnosis. What a wonderful doctor! I was put on prednisone, and then after that, a host of other meds. I now take naproxen, which seems very efficacious. I can relate to the daily pain and fatigue...I fight that battle, too. I also am part of a support group for AS on Facebook. It's nice to know I'm not alone in this!
This sounds like my story thru and thru. I finally was just diagnosed a few days ago. After a positive HLAB27. I honestly do not even believe them. As its been hundreds of doctors over the years. Ive even tried to get my primary 3 years ago to look into AS, and my surgeon last year after spine surgery. Because my pain was still there, months PO. I am not sure I believe this. Because if its true. I cant stop running all the shit doctors in my head who dismissed my pain, treated me like a drug seeker, treated me like I was imagining it, like I was just "sensitive". Like It was purely a slipped disc, then 2 discs, then 3 and a tear, then ruptures. Then Im over sensitization and im in a pain loop. No, theres something actively causing my pain and its getting worse. I continued to state this to whom ever would listen. Ive been ready to write my WILL the last couple of months because the pain has gotten so bad. So to be just diagnosed so quickly and randomly because a NEW PT sent me to a Rheaumatologist after meeting me for 5 mins.
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
Looks like no responses from the founders of this site, it's now Jan 2020 No New videos posted, no New updates that I have found from them, (Vicki or Stephi) except new comments left by all of us.. Does anyone know what's going on with this channel? I Was really hoping to subscribe but doesn't make any sense if there is no new info or videos being posted, I was excited to find the channel through Vicki's story but Nothing new for many yrs posted, Hope their all okay, they were so informative.. Please advise if anyone has more info about this channel Thankyou
i am so wth this woman x
I’m in SO MUCH pain this year. I’m unsure how long I can work standing all day, but how will I pay my bills, if I don’t. I’m miserable and people close to me notice the change and increased irritability. No pain pills in this post opioid prohibition and I can’t take anti inflammatories because of GI bleeds. I’m in serious despair. It’s all over me ( feet, achilles, ankles, knees, Sacral, lumbar, cervix, shoulder, elbows, wrists, hands) I am positive for the genetic 27 marker. I had Breast cancer this time last year. This is FAR worse and long lasting, getting worse each year.
Take a look at The Low/No Starch Diet for Ankylosing Spondylitis on face book, over 8000 AS+ people treating AS with fantastic results, I am one of them and I have my life back.
Are u on biologics ...how r u feeling today?
I don't think I know anyone with AS who was diagnosed quickly. Especially those of us that don't have the gene for it. That said I wonder if you worry about progression of the disease without treatment? I've been on almost every Biologic and have had massive allergic reactions to most. I'm also alergic to NSAID'S and the steroids have been used too often for them to work anymore. That's also something they wont always tell you, the steroids wont work forever. Currently I am being treated with Opioids and Humira. The Humira has been stop and go for over a year due to infections. I'm on weekly injections and now on week 5. I've only had one flare and it only lasted 48 hours. That said I am seeing progression of the disease. My rib cage, neck, shoulder and spine movement is all down. So that is why I have chosen the biologics. I have 3 kids to raise and I can't afford to be in a wheelchair or have a machine breath for me or pump my heart. We all have to make the best choice for our lives. I have to slow down the progression and I'll do anything to make that happen. Also I'm on an antiinflamatory diet/a stricter version of the Fodmap diet. It really does help, but it's definitely not for everyone. Good health to you and yours!
What's the food plan your on please been told nothing
@@teresawilkinson1775 look up the FodMap diet, but I also eliminated fatty meats, all nightshades, gluten and dairy. It's a very Asian diet.
You are walking so good I can't walk properly bcoz of groin and lower back pain
Yeah, the rheumatologist I first had didn't like me anymore after I researched and decided not to take the drugs he prescribed. Some of the men doctors really don’t like it when female patients don’t follow their directions. I changed my diet, and found a new rheumatologist. She respected that I didn’t want to take the drugs but still helped me.
Can u help me by telling me what u eat and how it helps please
Long-term, chronic pain will mess with your head, big time.
You're right. I've had AS for 54 years now. It's been a long haul. It defines the person I am, for good or bad. If I was 'cured' I think my mind would reinvent it. AS and me are now the same thing. But I never give up, or maybe I just don't know when I'm beaten.. read it either way. Maybe I'm presenting a rather bleak view of AS but there is definitely an upbeat side. It's focused my mind to what's important in life and concentrate on skills that I am able to exploit. It's also given me a better appreciation and compassion for others who are suffering more. I hope this helps, so good luck and don't give up!