I was diagnosed with Ankylosing Spondylitis/Axial Spondyloarthritis at age 19… then I was diagnosed again at age 33. I went years without treatment after I was thrown into remission after my first diagnosis. I was on Remicade, (a TNFi,) that helped me so much the first time. I hate that because I was thrown into remission my diagnosis was taken away. But physicians are now certain AS is what I have, this is that story.
I highly recommend checking out information from the Spondylitis Association of America (SAA): https://spondylitis.org/
They have support groups and so much good information on their website about Axial Spondyloarthritis and Ankylosing Spondylitis.
(I want to be transparent here… as of the filming of this video I sit on the Advocacy Committee at SAA as a volunteer. This video was not sponsored in any way, I just felt it necessary to disclose that.) If you have any questions about Ankylosing Spondylitis please let them below.
Watch the video
Below is a transcript if your prefer to read it:
00:00:00:00 – 00:00:22:09
When I was 12 years old, I started suffering from severe and debilitating back pain. I had just graduated from elementary school and was moving into middle school for seventh grade and it kind of came out of nowhere. Let me tell you the story. My ankylosing spondylitis journey started when I was 12 years old. I started suffering with severe and debilitating back pain.
00:00:22:10 – 00:00:59:03
I had just entered my middle school years. I was in seventh grade. I was having a fantastic time in the theater department doing musical theater and dance and singing. I absolutely loved it. And all of the sudden I ended up having this back pain that would not go away. It kind of started after I fell. I tripped over a gate lock that was on the ground and my backpack kind of went over my head and I remember my toes hurting and my knees hurt a bit and my back hurt a little bit at that time.
00:00:59:11 – 00:01:26:06
But the back pain never really quite went away as the back pain persisted. My parents became concerned, and so did I. I was having difficulty going to school because school seating is absolute garbage. It’s wooden seats with wooden tables so that you have to get in and out of and you have to walk around campus with all of your books because they wouldn’t allow us to use lockers.
00:01:26:06 – 00:01:57:10
And it was murder for somebody that was having back pain. But my back pain continued. And so we started to make adaptations. My dad had the genius idea of getting me a rolling suitcase so that I could put all of my stuff in there and go to school. This was back before rolling backpacks were actually a thing and so I was teased and taunted by all the rest of the kids simply because I needed this aid in order for me to go to school and not be in excruciating pain.
00:01:57:10 – 00:02:22:21
The entire day. But the pain persisted. And so I started to see different physicians. I saw my pediatrician a lot. My family was taking me to doctors all the time, but nobody could figure out what it was. I had this chronic back condition that they thought I might be faking. After seeing a ton of different physicians for years, I started to feel like there was no hope.
00:02:22:22 – 00:02:55:14
It had become exceptionally difficult for me to go to school and sit in those chairs. So my parents filed for an IEP to try to get me the necessary accommodations that I needed. But the desks and chairs they provided were still not great. It was wood, and I couldn’t sit on wood for really long periods of time. This low back pain was severe to the point where eventually at 12 or 13 I was given muscle relaxers in large quantities to try to stop the pain.
00:02:55:15 – 00:03:15:29
Was that right? I don’t know. They were kind of throwing things at the wall by then and didn’t have any idea what was going on because all of my bloodwork was showing up completely normal. So eventually I stopped going to school. I missed out. On being able to participate in the performing arts magnet that I desperately wanted to be a part of, but I couldn’t do it.
00:03:15:29 – 00:03:41:20
I simply could not stand literally because of my back pain. I couldn’t continue to be in uncomfortable environments. And so I started to rebel a bit. I stayed at home, laying in my bed, bingeing, just absolutely terrible talk show TV all day long because we did not have cable when I was growing up. And I just kind of dealt with the pain.
00:03:41:21 – 00:04:06:04
I let it sit there because the physicians couldn’t tell me anything. They just kept kind of telling me it would go away or telling me it was in my head. Or maybe it was growing pains, but it wasn’t. It 100% was not growing pains. So after missing the majority of my middle school years, I was culminated because at that time they didn’t have me repeat grades, even though I failed every single class I was in.
00:04:06:07 – 00:04:29:04
I was actually very lucky that they just culminated me to high school by the summer of eighth grade. My back pain started to get better to the point where I could start doing activities with other people and I could start participating in things. And once I got to a new school, even though all the furniture was the same, my symptoms had gotten a bit better.
00:04:29:11 – 00:04:50:29
Maybe my back was better, maybe I had an injury and it just went away. So I took it for what it was and went into a performing arts magnet. Middle school, sang my heart out, danced my heart out for a couple of years. By age 16. I started to have gastrointestinal symptoms as well as peripheral pain in my joints.
00:04:50:29 – 00:05:16:13
I was having issues with my hands and my wrists and I had off and on issues with my knees for many years, and it kind of culminated when I broke my ankle while trying to step down off of a stage. I did it pretty spectacularly in front of a lot of people by breaking my ankle, I think was kind of the first catalyst into the back pain coming back.
00:05:16:13 – 00:05:39:29
I broke that ankle about six months later. I broke the other one. I started having chronic pain in my ankles all the time. Even though I had done physical therapy. Like the physicians told me that I needed to do, it just never seemed like anything went away. Constant physical therapy, but absolutely no relief in pain. As I progressed through high school.
00:05:39:29 – 00:05:58:27
My back pain started to get worse. But I was really lucky at the time. I had a lot of friends that kind of understood that I had limitations and that I had to do some things differently or I had to take it easy sometimes, or maybe I had to have a wheelchair and ask somebody to push me if we ever went to Disneyland.
00:05:58:27 – 00:06:21:27
But it still was painful. And at that point I was starting to see physicians on my own because I was allowed to. I was 16, 17, 18. I was driving myself to physicians appointments and letting my parents know what was happening. And I was trying to advocate for myself, trying to figure out why I was having these gastrointestinal issues as well as his back pain.
00:06:21:27 – 00:06:47:27
So I graduated high school, did completely fine in high school, missed really? Absolutely no school. I don’t know if it was the environment was different. It wasn’t as much of a shock as going from elementary school to middle school. I have no idea. I just know that I was okay enough to be able to get through all of those years and very much so enjoy the performing arts program that I was a part of and make a lot of friends in high school.
00:06:47:28 – 00:07:23:29
After high school ended, I really started the push with the physicians in the HMO medical group that I was in to try to figure out which physician I needed to get to in order to figure out why I was having this back pain, because I had turned 18. I had culminated from the pediatrician I had seen for a really long time to a general physician, an internist, and speaking to the internist that I had, they recommended that I see rheumatology because why am I having peripheral joint pain in back pain and is persistent and nothing really seems to be helping.
00:07:24:00 – 00:07:49:16
Physical therapy isn’t helping, medication management isn’t really helping, and it’s really significantly impacting my life at this point over the next year or so. I saw a rheumatologist who basically told me that nothing was wrong because again, all of my blood work was coming back normal. My C-reactive protein was normal, my side rate was normal. Any inflammatory markers that they were testing for at that time were 100% normal.
00:07:49:16 – 00:08:13:02
And it was really frustrating because they couldn’t tell me what was wrong. But I knew that something was wrong at that point. Now we also have to think that this was 20 years ago and so the Internet is not what it was in terms of medical information as it is now. Now, it would be much easier for me to go online and be able to kind of find some potential diagnoses at this time.
00:08:13:02 – 00:08:34:27
It was very difficult to do that and you had to be incredibly skeptical of the information that you were reading online in terms of medical stuff, because there weren’t the sort of mainstream medical websites that were widely recognized. So I trusted the rheumatologist that I saw. He kind of told me that nothing was wrong and I couldn’t see any reason to push forward with him.
00:08:34:28 – 00:08:56:04
So I went back to my primary doctor and I asked for a second opinion. I saw a fantastic rheumatologist who listened to me, took an incredibly detailed history of mine and really kind of started to sit down and think about, okay, your inflammatory markers are not showing me that anything is wrong. None of your X-rays are showing me that anything is wrong at this time.
00:08:56:14 – 00:09:15:10
None of the MRI’s that we’ve done in the past is showing that anything is wrong. Yes, you have a history of pain off and on in the periphery as well as chronic low back pain. For longer than six months. But he still wasn’t 100% sure what was going on because I was so young and I was a woman.
00:09:15:18 – 00:09:41:08
So he decided to do some extra testing. So he decided to order a bone scan. A bone scan is a nuclear imaging test where little radio tracers are injected into your bloodstream. And when I had done specifically went to areas of inflammation, he decided to do it on the whole body because I was having this peripheral pain off and on as well as this super chronic, low back pain.
00:09:41:12 – 00:10:08:21
He decided, Let’s just do the entire body. You’re already getting those little radio tracers injected. So. Well, let’s just see the whole body. So the rheumatologist ordered that test, and he also ordered a couple other blood tests that I hadn’t had done before. And about six, seven weeks later, I had a follow up with him and he looked at the bone scan and said that every single joint was lit up like a Christmas tree.
00:10:08:21 – 00:10:32:14
My knees, my ankles, parts of my hands, my wrists, as well as my low back and my entire spine. After that, he proceeded to say that I was hla B 27 positive, which at the time meant absolutely nothing to me. I had no idea what that was. But he then told me that I had something called ankylosing spondylitis.
00:10:32:19 – 00:10:59:00
So this medical physician ended up giving me an idea as to what was wrong with me. And we started a biologic medication, Remicade, right away. And after receiving Remicade for several months, I started to feel better, stomach issues started to feel better, my back pain started to feel better. I was more able to participate in college classes. I was able to dance.
00:10:59:00 – 00:11:18:07
I was able to do all of the things that I wanted to do with minimal to no pain. I’m not going to tell you that the biologic completely got rid of my pain because that’s just not the case. I was still taking anti-inflammatory medication. Sometimes I would push myself too hard, but the biologic medication was definitely worth it.
00:11:18:09 – 00:11:39:16
So I stayed on the biologic medication and I stayed with this physician for many years. I was on the biologic medication from age 19 to age 24. At age 24, I was getting ready to graduate college and I was also getting ready to marry my husband. And I knew at that point that marrying my husband, I was going to have to get on a different insurance plan.
00:11:39:16 – 00:12:03:07
And out of this HMO system that I had been in since I was a child. So I prepared myself. I researched rheumatologists in the area for my new PPO plan, and I made an appointment, saw the rheumatologist, and that rheumatologist looked at me, looked at my medical records and said, You don’t have any closing spondylitis. Now, normally this story ends with this.
00:12:03:07 – 00:12:27:20
Doctor did their due diligence. They did a ton of testing. They’ve diagnosed me. I’ve been on a biologic for many years and I’m feeling pretty good because I was probably thrown into a remission at that point. So this doctors took it upon themselves to completely question that diagnosis. This was something that happened to me a lot things that I would hear as a young woman within closing spondylitis.
00:12:27:20 – 00:12:52:25
You’re a woman. Most women don’t get ankylosing spondylitis, so it has to be something else. Are you actually be 27 positive. Do you really think it’s ankylosing spondylitis? You’re not showing any sort of degradation or bamboo spine appearance on x ray. You definitely don’t have any loss in spondylitis. I think that other doctor’s wrong. You’re not a man under 40, therefore you can’t have ankylosing spondylitis.
00:12:52:25 – 00:13:16:12
These are the tropes that I would hear from rheumatologist intern this surgeons. Any sort of medical physician that I would see would constantly question the diagnosis of ankylosing spondylitis. So at that time I wasn’t really showing symptoms. I had been on Remicade for many years. It had slowed whatever progression was happening with the illness at the time, it got rid of my symptoms.
00:13:16:12 – 00:13:46:18
It did what it was supposed to do. So that rheumatologist telling me that I must have an incorrect diagnosis turned into Let’s do a whole bunch of testing. And what did the testing showed? It showed very similarly to what was happening before I was in show integration on x ray. At that point, I wasn’t showing degradation on MRI and nobody would do a bone scan because they thought that it was completely inappropriate in order to diagnose something like increasing spondylitis.
00:13:46:19 – 00:14:12:03
So after I saw that first rheumatologist who said, I don’t think you have it, I’m not going to treat it, I saw another one who said the same thing. I saw another one who said the same thing. And I saw another one who said the same thing. So I biologic medication stopped. I couldn’t find a rheumatologist who would believe that I had enclosing spondylitis, even though I had medical records as well as positive gene to prove it.
00:14:12:03 – 00:14:40:17
So at that point I just kind of stopped searching for rheumatologist. I gave up at that point because again, I was in remission. I was feeling pretty good. Stomach issues were, were like gone completely. I was having other issues because I also have a hypermobility issue. But that’s another video. But I could not get a physician to actually believe that includes the spondylitis diagnosis.
00:14:40:26 – 00:15:00:11
So then I started to question whether or not that was actually true, because even though I was having other issues at the time, the low back pain wasn’t there and I was feeling pretty good and I kind of just wanted to live my life. Getting infusions all the time was really frustrating. It ate up a ton of my life because I had to go in every four weeks.
00:15:00:11 – 00:15:17:12
I had a port-a-cath put in. It was miserable. It was really miserable to have to go in for infusions all the time as a young 20 something. So I stopped. I stopped looking for a rheumatologist and I stopped and I, I basically told people that I was misdiagnosed pretty closely. Spotlight isn’t that I didn’t have it.
00:15:17:15 – 00:15:47:20
So I went about seven years without being treated for enclosing spondylitis because I was told I didn’t have it. Well, come 2016, I had just started working for the first time in a really long time. I was doing work from home. It was a lot of stress happening and at the evening dinner table I remember now looking back, I kept telling my husband that my back hurt like it did when I was 12, and I kept saying it over and over again.
00:15:47:29 – 00:16:16:08
I thought it was maybe because I hadn’t really been sitting at a desk and working for long periods of time. And that’s maybe why my back was hurting. But I kept saying it over and over again on my back. Hurts like like it did when I was 12. It hurts like it did when I was 12. Well, ask forward a month or two and I had my first bout of I write is I write is is inflammation in the eye and a lot of people with ankylosing spondylitis have it.
00:16:16:08 – 00:16:36:06
So I my writers came out in the evening. I just kind of felt a little pain in the upper portion of my I kind of felt like somebody had punched me or like I had hit my face really hard, felt like a bruise, and I just could not focus on anything that my husband and I were watching on television.
00:16:36:16 – 00:16:56:12
And so it popped out my contacts and I just went to bed. Oh, I woke up at about 4:00 and both of my eyes were so red and I could not open them because of the light. Any time I opened my eyes, saw any sort of light, it was like stabbing daggers inside of my eyeballs. It was so painful.
00:16:56:13 – 00:17:14:27
And so I it was so early in the morning, I just went out. I turned on the television so that I could listen to something and kind of wait for my husband to get up. And I knew that there were no ophthalmologists that were going to be open at that time. And so while looking at my phone sideways, I kind of scrolled so that it wasn’t super bright.
00:17:14:27 – 00:17:33:00
It was on the lowest setting, but even the lowest day was just way too bright. So I’m scrolling through my phone and I’m trying to figure out, you know, typing in like, what is this eye pain, eye pain, sensitive to light, blah, blah, blah. Of course I write es uveitis. They both popped up immediately and I’m like, okay, maybe, maybe this is what I have.
00:17:33:01 – 00:17:54:06
And I was really lucky. I found a very fantastic ophthalmologist that was able to take me in the same day. Now I’ve had eye issues and so I’ve seen a lot of ophthalmologists throughout the years. It’s something that’s completely separate from any of the other medical conditions that I had that caused me to have to see an ophthalmologist a lot.
00:17:54:06 – 00:18:12:06
And so like I was fearful that something else was wrong. But in seeing the ophthalmologist just by me telling her the symptoms, she was pretty sure that she knew what I had. And then she looked in my eye with that stupid slit lamp like, Kill me, please. It was slightly better, though, because she had put numbing drops in my eyes.
00:18:12:06 – 00:18:30:24
And so that like enormous pain that I was having, it stopped. Then she dilated them and that was like even better then I felt like so much relief, just being able to have the numbing drops and the dilation. She looks in my eyes with the slit lamp and she sits back and she says, So what else has been happening with you medically?
00:18:30:27 – 00:18:54:20
Because I do have a fairly complicated medical history, regardless of the fact that at that time I didn’t think I had ankylosing spondylitis at that moment. And I started telling her about the fact that my low back hurts really bad and it hurts like it did when I was 12. And then it hit me. I was diagnosed with ankylosing spondylitis, but then that diagnosis was taken away because all the physicians didn’t think that I had.
00:18:54:20 – 00:19:15:29
It is what I told her. And I told her that I was maybe 27 positive. And she said to me, Do not ever let another physician tell you that you do not have ankylosing spondylitis, because if you’re having back pain as well as I brightest, you definitely have ankylosing spondylitis. So that was the second time I was diagnosed with it.
00:19:15:29 – 00:19:39:19
I then found a really great rheumatologist who immediately put me on biologic medication and within several months I started to feel much better. My right is went away after multiple rounds of steroids, multiple dilation drops. I mean, it was really hard. I remember like I was working a job for the first time in a really long time and my eyes were dilated the entire day.
00:19:39:19 – 00:19:59:06
Like, if you’ve ever had your eyes dilated, which I think most of us have, it’s really difficult to see. But after being on the Remicade for a bit, I started to be able to sit for longer periods of time and start to do more things again. The pain wasn’t there. Now I still had a whole host of other medical issues that I was trying to deal with at the time.
00:19:59:15 – 00:20:20:29
Gastroparesis being one of them. If you want to hear about that, you can click up here somewhere and I’ll put a link in the description of that. But I was able to at least get that confirmation of take notice of ankylosing spondylitis. So what’s the moral of this story? Why did I want to tell it? Sometimes the medical system is flawed.
00:20:20:29 – 00:20:50:12
Sometimes physicians are going to question other physicians diagnoses or thought processes. Maybe because they don’t have all the information or maybe because they just 100% disagree, but doesn’t necessarily mean that the physicians are wrong. I can understand the physicians who took away my enclosing spondylitis diagnosis because I wasn’t displaying symptoms at the time and I didn’t have any sort of degradation on x ray or any sort of imaging that they were doing at that time.
00:20:50:13 – 00:21:18:13
After being not treated for seven years or so, after being pulled off of the Remicade aid, I now do have degradation, particularly within my neck, but they didn’t know and so do I blame them? Not necessarily. I kind of blame myself for not pushing harder to find a physician that would continue on with the treatment, because I may not have had a lot of flares of some of the other medical conditions that I did.
00:21:18:22 – 00:21:41:06
So moral of the story is you unfortunately have to advocate for yourself. I know that patient advocacy for yourself is extremely hard, especially when you are in pain and you’re dealing with insurance companies and you’re trying to call physicians offices and make appointments with doctors that say that they don’t have anything for six months. But you have to continue to push through if you want to get some sort of a diagnosis.
00:21:41:06 – 00:22:08:24
If you’ve had an ankylosing spondylitis diagnosis, I’m extremely sorry that you’re in the same club as me, but there is a lot of research going on. The Spondylitis Association of America publishes information on their website about ankylosing spondylitis as well as non radiographic axial, spongy arthritis and many of the other spondylitis grouped conditions. I highly recommend educating yourself by reading their site.
00:22:08:28 – 00:22:31:15
I do want to disclose that at the time of filming this video I currently sit on the Spondylitis Association of America’s Advocacy Committee, and I do that because I want to help people like you. I want to help people who are either searching for diagnosis, have been diagnosed, don’t exactly know what to do. And so if you have any questions, put them down in the comments.
00:22:31:15 – 00:22:51:09
I am more than happy to answer any sort of questions. I am a breadth of knowledge. I’ve dealt with the medical system since I was 12. I’ve been advocating for myself since I was 12. Basically, I was kind of forced to and I think a lot of us that have chronic conditions are forced to do that. If you found this video interesting, please consider sharing it and subscribe.
00:22:51:09 – 00:22:59:25
We talk about disability, chronic illness, and basically how to live life with that. If you like this video, you might like this one next. Thanks. I’ll see you next time.