Hi all. I sincerely do not wish to cause hurt or anger for anyone in this group

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  • I agree with some of what was written and I agree with Jamie “this disease is different for each person”.

    Some of us were diagnosed to late, biologics will not fixed a fully fused spine including the skull, two neck breaks and surgeries, fused ribs, fused hip, lung involvement and not permitted to exercise. If you can get on meds when it starts you truely are a lucky one.

  • I have worked with many palliative care children and adults. Palliative!!! non verbal for the better part...but they still smile. So I will wait to complain.. until the day comes ..when i can't put my own pants on..I will push through the depression associated with this pain in my life. There are good and bad days..balance is my key.

  • What's so odd is that a rheumatologist told you these numbers about AS and not fibro. Last year EULAR, the WHO, the arthritis foundation and most every group based in the world of rheumatology stated that AS and all the spondyloarthtides are the most underdiagnosed form of autoinflammatory arthritis. Almost every research paper that's been peer reviewed in the last 15 years states that women get it almost equally as often as men but are misdiagnosed. My father is a doctor who was just diagnosed with it, and my rheumatologist not only is widely considered the best in my area, but is also a professor of rheumatology at two medical schools, is a national fellow of rheumatologist and is on the board and also helps write CMEs for doctors to learn and everything he's said to me, written for internationally, and courses he's designed for med students and for doctors say the numbers you mention are all very wrong and the former belief.... not saying your doctor didn't tell you this but go on to any medical research site such as the annals of rheumatology, medscape, research gate and they'll all say that the numbers you're citing are the former belief that have been proven wrong. A Dutch study last year found that 1 out of every 2 people with AS will have to see at least two rheumatologist before they get diagnosed. They said it was so underdiagnosed that they now teach radiologists specifically to read for it as an us based international study reviewing mri and radiographic imaging showed that more people who were told they had USPA avtually had AS but the radiologists read them wrong....

  • I do keep positive thoughts and that's what helps the most. In my area it's hard to find a good Dr that will actually listen and take the time to look into what AS is and the treatments for it. My mother has it, I have it and I have a daughter that has it. Information stating that it is mostly common in males is outdated. My issue is that I am also double jointed, there are others that have this issue as well. Rheumy told me I could NOT have AS if I was double jointed. I can not get any dr I've seen to get me past taking Indomethacin. For the most part it does work where many others have failed, the issue lies with my ins, they want me to spend 3 months at a time taking no less than 3 different meds before they will approve for me to even try a biologic of any kind. That's no less than 9 months of meds I have tried before that's equivalent of taking a sugar cube

  • Indocin is the ONLY nsaid I get relief from, and often times I think even more so than any opiate. Typically if yu fail nsaids and then rwo to three dmards including MTX and azulfadine yiu can, but unfortunately every insurance is different. I help do alot of prior auths for work and some are ridiculous the requirements they want met

  • I can't even get an updated MRI because they want some kind of extremely detailed explanation as to why I need one.

  • I've had to take the bull by the horns and call my insurance myself, explain my or my son's situation, prior history and testing blah, blah, blah...basically wear them down until they agree to put through the pre-auth. Pain in the butt, but beats waiting for some clerk or tech in my Dr office to get creative! Lol

  • I might try that.

  • Hi Sherry, I'm Christiana's mom. I'm afraid I am the one who gave her AS. But she know's I have never let it stop me from doing what I want to do. Which means I didn't do what the doctors said to do. IE, sit and let someone else do it for you. You are only as good as your willpower.

  • Not your fault, probably what kept me from being a wild child

  • I was diagnosed with juvenile AS as well, it's super aggressive. Spent a couple of yrs unable to walk as a teen from it, now I'm hoping to compete in powerlifting for the first time this year. There's hope for us all! Just continue with treatments and keep moving!

  • I was JUST diagnosed. When you say meds, do you mean biologics? Do they stop the progression of things fusing? My one si joint is sclerotic. I just found this out in the last few days. Pretty sever degenerative changes is spine but not sure if that is the AS or not.

  • Wow your Rheumy is dumb. "The extreme clinical variability of JHS/EDS-HT identifies a great number of partially overlapping (acquired and genetic) disorders showing the variable association of mucocutaneous fragility, JHM, chronic musculoskeletal pain and fatigue. Among them, there are other HCTDs with JHM, the “battered child” syndrome, bleeding disorders, and various rheumatologic conditions with chronic musculoskeletal pain, such as ankylosing spondylitis, rheumatoid arthritis, and fibromyalgia." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC35123 26/

  • I actually felt that EDS and AS were related and found a few medical documents that say that they are. It makes sense. EDS is a collagen defect that shows up in connective tissue such as tendons. AS is a disease where the immune system is seeing connective tissue, especially tendons, as a foreign body. Why would it be a jump to think maybe the collagen defect is triggering the autoimmunity? BTW they say people with EDS are also likely to have RA also.

  • I've given up on Rheumatologists for now. The last one I went and saw told me AS doesn't cause headaches. So your whole spine can fuse, even your neck, but that isn't going to cause you to have a headache? Give me a break.

  • Does the insurance company say that the doctors office has sent the form in? Then it got rejected or is the doctor not sending the form at all. Seems like the nurses fill it out and the doctor signs it, most places I've been, ya have to harass the nurse.

  • I understand where you are coming from with you rant, but it makes me wonder if you have ever been in that place? At one point, it hurt for me to take a shower, the water itself hitting my skin was painful. I had so many muscle spasms that I would be sitting at my kids soccer field and my arms would be moving in a seizure like way. I lived those days between a 7 and a 9 pain level, usually an 8. I could barely walk, I couldn't drive. I had headaches that left me unable to have conversations with people. I put myself on a 1200 calorie diet and lost 40 pounds, but it did nothing for how I felt. I was just hoping it get a doctor to look at me and not my little bit of extra weight. Even after being put on Humira physical therapy made me worse, not better. They actually tore something connected to my knee, I was bruised, and they ignored me. I don't think that my thoughts of suicide were unrealistic for my situation. I never planned it, but I thought about it, and day dreamed about how it might go down. To an extend it helped me get through the day, to know that there was ultimately a way out. So I guess I empathize with what people are saying, and I don't want to tell them that what they are feeling is wrong. One of the therapeutic things I did for myself was reach out to people online that felt the same way I did, the devastation of it all. I mean I was jealous of cancer patients. They either got better, or they died. At least for them there was an end, were as I didn't see one for myself.

  • Thank you for sharing, I know these feelings all too well also. It's a hell of a disease and depression is very common with chronic pain.

    I hope you're doing a bit better now x

  • Thank you, I'm doing a lot better :) My best medicine was getting away from the stress caused by my ex husband.

  • Usually when someone starts a comment with the statement that they don't wish to cause hurt or anger, what follows next is a loaded statement. Many of us have family and friends who are unsupportive and second guess the decisions that we make with the help of our doctors. Many of us have been diagnosed after 10 years of trying to find answers.

  • I had juvenile arthritis that was untreated due to parental neglect, which manifested into me being stuck in a wheelchair, unable to leave my house, on fentynl patches, at the ripe old age of 23. I lost my jobs, I could no longer exercise the way I used to. My whole world disintegrated. I don't have family supports like alot of people so it was just me, in a very remote rural town with only 1 GP, without a car license because I didn't have anyone to teach me to drive, and my savings quickly got annihilated by medical bills. So, I get what the depressed crowd on here are talking about, it can be devastating, and that's part of the issue. Alot of us are isolated from people who have experienced this illness, geographically, physically, emotionally etc so it can be really therapeutically beneficial to have an online "group therapy" type session. It's a safe space to share often hidden feelings without harsh judgement or repercussions. Simply stating the generic health lines to call isnt likely to help people in that state because they are aware of the bureaucracy and mandatory psych intervention that could follow. I've also heard horror stories about the American healthcare system actually putting depressed and suicidal people into debt for treatment, which obviously only further aggravates the situational depression. Also for alot of people these feelings are healthy, being depressed over inconsequential things is a sign of mental illness but being depressed, angry and frustrated that you've suddenly lost the ability to use your legs is justified, valid and a completely natural response to that situation. Grief needs to be felt and expressed so the patient can move on. That's just my opinion on that matter take of it what you will. As for the difference in diagnosed patients... I do share a similar theory, one I've discussed with other people with severe, aggressive AS. It seems to be that for us, things are very very very different than they are for other patients. We have discussed the possibility that there is another disease or another gene expression that is causing the severe difference in symptom and pathology expressions. Ultimately there needs to be alot more research into this disease to be sure. I in no way mean to invalidate anyone's pain or life experiences with that opinion, it just seems like some sufferers are dealing with an entirely different health problems from other suffers, the symptoms arent even in the same ballpark. All that being said, I have found a way back to myself through this illness. I eat a really strict healthy diet, I take plant based medicines instead of painkillers now, I am on biologics /interleukin therapy and i'll stay on that course for as long as it works. I'm ok now. I'm not who I was before but I'm better than I was when it started. With the right information and practical knowledge there is hope at a better existence with this disease.

  • Headaches make sense to me, hello fused spine = pinched nerves

  • They sent me a letter stating they did not have sufficient information to approve.

  • Thank you.. my thoughts exactly. I have heard fibro so many times in my circle of friends and if I mention AS..they all look at me like I am speaking another language. AS is not on the forefront of rheumatologists minds. They are more likely to not even consider it or if you mention it they let you know its a Mans diesese. Rheumatologist are not that knowledgeable to go about mis diagnosisong it like they are handing out candy. Simply not possible, since most women suffer for 15 to 25 years before they are diagnosed.

  • That's good to hear :) it's remarkable how much better cutting out toxic people makes your health

  • Also in addition to what you've said, I know personally as an adult my condition has calmed down a lot from when I was a juvenile and more treatment options that weren't good enough before seem to work now. So I think for kids at least it can be very aggressive and for some people it just never slows down, and some very lucky people don't get or haven't experienced (yet, fingers crossed they never do) those extremely disabling, never ending flares.

  • Yeah, considering its still considered the most under diagnosed of the inflammatory diseases it's odd to hear this yet sounds exactly like what doctors will tell you about fibro

  • So true!

  • Which is exactly why we need to be supportive to each other, and understand things aren't the same for everyone.

  • Is there a difference between juvinile AS and being diagnosed with AS at 15?

    I got diagnosed at 15 with "Ankylosing Spondylitis" after difficulty standing or walking for 2 years

  • Yes, Biologics and others. As far as biologics it will not help damage already done but may help other realated issues.