Hello, my name is Summer and I was diagnosed with Ankylosing Spondylitis in early 2016. I suffered through 19 years of undiagnosed symptoms prior to finally receiving adequate care from a knowledgeable Doctor. Today is going to be a bit different, though I will not be able to completely depersonalize this blog, but this is going to be more about the factual scientific or medical stand point. There is a bit of confusion as to what is what and how it relates to individual care. I want to break the stigma that medical conditions must follow some text book guideline of how they behave. That being said, let's get more serious!
What Is Ankylosing Spondylitis
According to the Spondylitis Association of America Ankylosing Spondylitis is a form of Arthritis that primarily affects the spine, although other joints can be involved. It causes inflammation of the spinal joints ( vertebrae ) that can lead to severe chronic pain.
Ankylosing Spondylitis- Ankylosis ( meaning abnormal stiffening and immobility of a joint due to fusion).
Spondylo (meaning spine)
Itis (meaning inflammation)
It is also said that in more severe cases this inflammation can lead to ankylosis (new bone formation) causing a fused and fixed immobile position.
The Laser Spine Institute, states that Ankylosing Spondylitis can be referred to as Autoimmune or Autoinflammatory in nature. There is much debate as to which category it should be classified under. Autoimmune being when the immune system begins to attack your bodies own cells as if they were an unhealthy invader. AS does share some similarities with this type of disease.
Autoimmune or Autoinflammitory
In an Autoimmune disease the body attacks an antigen that is produced by your own body. In short this means that an autoantibody must be present to gain classification as an autoimmune disease. The tricky part is that in diseases like Ankylosing Spondylitis the body's immune system is involved but autoantibody is not typical found in those cases.
Autoinflammatory means that the body is reacting as if their is a danger, but no autoantibodies are present. The immune system has two branches, the adaptive and the innate. The adaptive side makes antibodies that respond to a specific targeted factor. the innate side can respond more rapidly but with no specific factor in mind. This innate side is where proteins like TNF are found, and this is what generally is seen in autoinflammitory diseases.
So what does this mean, well for Ankylosing Spondylitis it is a little of both. Studies have shown infection spreading in animal testing by transferring the specific white blood cells from an unhealthy to a healthy subject. The result was the healthy subject adapted the disease, which makes it autoimmune. HLA-B27 also argues for the autoimmune side of things. However, bacteria have been suspected to cause some cases making it autoinflammitory along with it's lack of antibodies and it's connection to TNF protein. This tends to leave many in the dark about what category exactly this disease falls into. The bottom line is we need more research, study and time to make any better clarification than this.
If you have been given medical opinion that it is autoimmune, then your Doctor clearly feels confident you lean more towards that criteria than the other. I would also like to point out, that nothing says they can’t be both at the same time. The body is such a magnificent and incredible thing, and it can do anything it darn well pleases even if it falls outside of the textbook explanations of a disease criteria,
As if I hadn't given you enough to scratch your head over, I am about to make this a whole lot more complicated. AS is a member of the Spondylitis family, also referred to as Spondyloarthritis, Spondyloarthropathy and Spondylitis and SpA. AS is also classified in the family of Rheumatic Diseases, meaning successful treatment will only occur by seeing a Rheumatologist that specializes in these types of diseases and is believed to be seronegative in nature. Just how many classifications does this thing fit into? Well I am about to break it down for you.
Six diseases are currently included in the Spondyloarthritis family. Systemic inflammation is a key feature that separates AS from other diseases in the family. The six diseases are divided by the predominate disease factors. There are some main similarities with any SpA. These symptoms include, inflammation in the pelvis and back. Pain and swelling in other joints. Uveitis/Iritis of the eyes. Psoriasis rash of the skin. Inflammation of the intestines. Dactylitis of the digits and Enthesitis of the tendons and ligaments.
There are two main groups. Traditional SpA classification with the six diseases included in this category. The Newer SpA classification that only separates by two broad categories. I will talk more as we continue, for now let's look at the six diseases in the traditional family class. Ankylosing Spondylitis, Psoriatic Arthritis, Enteropathic Arthritis, Reactive Arthritis, Undifferentiated Arthritis and Juvenile SpA.
This is an arthritis of the spine with typical onset from 17-45, it is difficult to diagnose. This is the most overlooked cause of back pain in young adults, and it is not rare. It is more prevalent than MS, Cystic Fibrosis and Lou Gehrig's disease combined. Damage to other joints such as hips, shoulders, and digits as well as impact on eyes, heart and lungs. In severe cases the spine can fuse solid. There is no cure for AS but early diagnosis can reduce stiffness and lower the chances for disability or deformity. A hallmark of this disease is inflammation in the sacroiliac joints.
Early warning signs are gradual onset back pain, worse in mornings or at night and with rest. symptoms longer than 3 months and positive response with NSAIDS. Reducing systemic inflammation and activity are key to minimizing the risk of fusion in joints or enthuses between tendons, ligaments and bone.
The healing and repair process of inflammation over time is what eventually leads to fusion of the spine. This occurs because the damage leaves scarring of tissue that results in new bone formation. Not all cases of AS will lead to fusion.
This type of Arthritis can lead to fusion of the spine like in AS and they are genetically and clinaclly related. This being they both link to a connection with the gene HLA-B27. The hallmark of this disease being the Psoriatic skin rash. Symptoms include back pain, conjunctivitis, reduced range of motion, swollen joints, nail pitting and fatigue. Psoriatic Arthritis is also Autoimmune in nature. This being, the body attacks the skin causing Psoriasis and can eventually cause the Arthritis. This generally onsets in the 40's or 50's. The classic nature of this to cause inflammation in other area's of the body is why it is in the SpA family.
Enteropathic Arthritis is connected to Intestinal Bowl diseases. Individuals that have Chron's or Ulcerative Colitis are likely to have this type of Arthritis, about 1 in 5. The most common areas affected are the limb joints. Classic symptoms include abdominal pain. It is believed that long term damage of the bowls leads to bacteria leaking into the blood stream causing the arthritis. This however has not been confirmed by research. HLA-B27 is also connected to this type of Arthritis as well. The prognosis is much lighter than some, flares typically lasting six weeks and then subsiding for length in time.
ReA does not normally affect the spine. It can cause inflammation in bladder, genitals and mucus membranes. It is thought to occur after a reaction to an infection. This arthritis can go away on it's own or can be severe enough to need medical treatment. Most cases appear as short episodes.
Undifferentiated Spondyloarthritis USpA
Symptoms of this type of arthritis are consistent with SpA but do not fit in any other categories. These are not conclusive enough to give a definitive diagnosis even though symptoms are there. Over time some people with USpA will develop enough criteria to get a diagnosis of AS or one of the other diseases.
As it states, this form develops during childhood and usually has a prognosis for more severe outcome, Children tend to have peripheral arthritis as a predominate symptom as well.
This leads us to the newer classification, Axial Spondyloarthritis (AxSpA) and Peripheral Spondyloarthritis (pSpA). AxSpA is a much broader category of people with and without characteristic inflammatory changes of the SI joints on X-Ray.
This newer criteria is broken down into two main groups. Radiographic and non radiographic.Almost all people with AS fit into the radiographic category. Radiographic is when AxSpA is seen on X-Ray and of course, non radiographic is not seen. ReA, Enteropathic, undifferentiated and Psoriatic arthritis can fit in either category.
Peripheral Spondyloarthritis (pSpA) causes inflammation in the limbs rather than in the spine like in axial. Psoriatic is more typically found in this category while others can fall in either. it is also possible for a person to have both Axial and Peripheral arthritis. It is important to take note of the fact that Spondylitis and Axial/peripheral are umbrella terms. The traditional and newer classifications are often used together.
Spondylitis Association Of America
SAA is the premier resource for information, education, research and treatment. For 30 years SAA has been at the forefront of advocacy and research. They keep the most up to date news, information about treatment, medication and research on their website www.spondylitis.org Spondylitis plus is a great way to stay informed. Between the magazine, and pamphlets and EMS awareness DVD's they will do everything they can to be a voice for the Spondylitis community. SAA holds a credible application process for all volunteer support group leaders, and only work with the best rated, top of the line medical professionals.
The SAA works with a Scientific and Medical Advisory board and SPARTAN to provide research articles on Spondylitis. This organization created the first instructional video designed to make EMS workers aware of the potential risks of caring for an individual with AS. Many educational brochures have been created as well as the award winning Spondylitis Plus magazine.
Some Things Are Bigger
"Some things defy description and some things don't follow the rules of science. Some things are just larger than the sum of their parts." ( Spondylitis Plus Summer 2017 issue) When I read this line in the magazine last night as I was doing my research to write, it really stuck with me. I was a participant in a conversation yesterday that for the most part was someone trying to deny this very fact. It is probably one of the biggest medical mistakes anyone can make, assuming that anything is going to be textbook of the medical expectation defined in the school books and articles.
If life doesn't teach you more than one lesson, let it be that the body is an incredibly amazing and complex thing. Don't get caught up in the medical jargon or the wording of a paper, simply listen to what you know to be fact, and what your treatment team believes is best for you in that situation. I was lucky, once referral was made for me to see a specialist I have had the pleasure of working with some wonderful Doctors who listen to me and how I feel.
Don't Get Hung up On The Small Stuff
This list of diseases and the different classifications and how they are worded, honestly should be the least of our concerns. If we let ourselves get hung up on when we are allowed to call a disease a disease, we would never get any answers. They definitely don't know enough about the Spondylitis families, to give us all the answers.
My personal list of symptoms is rather long, and when you start throwing out so many different things, well, it becomes very difficult to determine exactly what is causing it. In the 19 years that I have suffered undiagnosed with symptoms, I had Doctors tell me I was crazy, that my symptoms couldn't all be related because it was to difficult to pin point what the cause was. I went to counseling, visited with a psychiatrist., physical therapy, GI Dr., Gyn, my GP, a Cardiologist and a Pulmonologist and Optometrist and a Neurologist. I was told I was a living episode of House at one point. Medications consisted of a long list of anti depressants, NSAIDS occasionally and some vitamins, a heart rate medication, a bladder medication, meclizine and heart burn medication.
During this time none of the medications worked, so they were constantly switched around and test never providing any answer either. I was switched from medication to medication with no proper step down from the antidepressants, I only got sicker and sicker and I lost all hope and gave up. I stopped all medications and did not return to see any Doctors for 5 years. The only reason I even started going back to the Doctor was because of my eyes. I had started having bouts of Iritis. This painful symptom made me wish I could stab my eye out with a fork. I had no clue what to do so I went to the Eye Doctor for relief. Like I said above, some things defy description and don't follow science, and I am a prime example.
Who would ever think that a visit to the eye Doctor would answer practically ever question I had. After the first flare, and it being extremely difficult to treat, I got it a second time my Doctor was curious at this point, and said he wanted to do lab work and asked me about other health symptoms I had. He explained he was looking for a specific Gene, the HLA-B27 marker that is connected to Ankylosing Spondylitis. He ordered the test and requested I go ahead and get an appointment with my Doctor to set up Rheumatologist referral. So I did and I tested positive for the gene.
Prior to getting in with the Rheumatologist, I ended up with my third flare of Iritis and in both eyes this time. The right eye was so bad that we never got it under complete control, My eye is permanently damaged from it and my eye Doctors are stumped. They had to actually do research to determine the next course of action, and we had to call every pharmacy in 3 cities to find one that could even order the potency level of eye drop I needed. This drop so potent that I had to return to my eye Dr. for each use because to much could cause heart complications. I now have to regularly go in for a quick pressure check because my right eye no longer dilates, it is stuck in the glued position that occurs from the sticky particles that build in the eye during Iritis. They love to see me, and always want to look at my eye under the scope just for fun, they informed me how rare it is to have something like this occur.
AS is the diagnosis that I was eventually given and I still see my GP regularly, we can't get enough control over symptoms for me to make it more than 6 weeks without seeing them, not to mention I am still developing new symptoms as well. This leads me to the next interesting fact, Did you know that most people who get a diagnosis in the autoimmune/autoinflammatory category usually end up with more than one diagnosis? It is also extremely hard to find a full medical team that all understand your symptoms and all work jointly to provide the best possible treatment.
This is the number 1 reason this has become such a passion of mine. I am determined to bring others faster relief, nobody should have to suffer for 20 years. Number 2 would be because there is so much confusion out there and we need to do everything we can to fix that. I became a member of SAA because they are the best when it comes to research, awareness, fundraising, and providing valid and reputable information to others. They work closely with the top groups like SPARTAN and use works published by highly esteemed medical professionals.
I am hoping by providing a more detailed and research based rather than just a personal account of AS that I can begin to make a difference in the level of confusion involved here. Yes these diseases are referred to as Arthritis type, but trust me they are the farthest thing from being just Arthritis! I am so blessed that I am able to turn my diagnosis into a gift. I am getting to build something that allows our community to feel validated after so many medical changes, confusion, and lack of common knowledge. I look forward everyday to going out and KICKING SOME AS.
Here's to Kicking Some AS
Spondylitis Plus Magazine
Spondylitis Plus Magazine