A.S. Face 1808: Ivy Asmus
My Personal Ankylosing Spondylitis Story:
By: Ivy Asmus
I apologize for this long post in advance but in light of recent events regarding my illness I feel it necessary, please read!!!!
As many of you who regularly visit my Facebook, Twitter, Pinterest, and other social media sites know that after 3+ years of knowing I was extremely sick but not knowing why I was finally diagnosed with a debilitating, incurable, painful, spinal deforming, life altering auto immune disease called Ankloysing Spondylitis or AS,
Since AS is not a commonly known disease, is hard to diagnose, and currently has no known cure, I have decided to share my experience with AS with others to hopefully help others who have this disease to be able to get diagnosed earlier. The reason that an official diagnosis by a rheumatologist is needed for AS is because they are the only doctors who can prescribe the biological medications needed to “treat” this particular disease. Now that I have been officially diagnosed we can finally move forward to find the medication or a cocktail of medications that can help me. By hopefully finding the meds that will slow the progression of my AS I will be able to keep what is left of my mobility longer, and if I am really lucky I will also be able to maintain my quality of life for a longer period of time than non treatment of AS would allow.
Since getting sick in May of 2014, I have undergone a spinal fusion at my L5-S1, as well as Sacroiliac joint fusions on both my left and right SI Joints. Since getting sick my illness has progressed to include constant intense pain throughout my jaw, shoulders, entire thoracic spine, ribs, intercostals, sternum, hips, knees, balls of my feet, wrists, and heels. I am also fighting severe dryness of my eyes that is so severe it is causing my corneas to deteriorate; and if we can’t get it under control I will likely lose my vision.
When I first started to feel bad I didn’t think much of it and just assumed that I had somehow pulled a muscle or twisted something in my spine while finishing up the school year working with my autistic kids and finishing up the post school year packing, cleaning, and moving. I let it go until one morning I woke up to get out of bed and couldn’t because the pain in my lower back was to severe. The only way I could get out of bed was for my husband to literally pick me up out of bed while I screamed because of the excruciating pain it caused. After 2 weeks of this my husband finally forced my hand and made me at least go see if I had a kidney infection, little did we know then that this would be a life altering event that would profoundly change the rest of our lives. After going to the doctor and getting medicine for what I assumed was a kidney infection I didn’t get better. So next my husband suggested I see a chiropractor as I really don’t like seeing regular doctors. I agreed to see the chiropractor, not knowing, that this one appointment would lead to finding out I have a debilitating auto immune disease.
I wish I could say that getting diagnosed with my auto immune disease was easy and that getting placed on the correct medications was a piece of cake, unfortunately I can’t. For the sake of time, I’ll summarize what it took to get diagnosed. The quick version goes like this (possible kidney infection > Possible Kidney Stones > Kidney Abscess > Appendicitis > Sacroilitis > Degenerative Disk Disease > Osteoarthritis > Ankloysing Spondylitis). The hard part was that even though my spinal surgeon recognized fairly early that I had Ankloysing Spondylitis, it would still take over 3 years of being extremely sick and 3 rheumatologist to finally get the official diagnosis and to start the long process of finding the med or med cocktail that will work best for me. The reason this took so long to get officially diagnosed is because in the world of rheumatology you have bad rheumatologist and you have great rheumatologists, but just good rheumatologist don’t exist. The 1st rheumatologist we saw admitted I definitely had some kind of auto-immune disease but chose to only look at his x-rays and not the MRI images from my spinal surgeon which showed damage in my thoracic spine as well as problems with my si joints, His x-rays were not capable of picking up the inflammation and arthritis in my si joints and only minimally showed the severe osteoarthritis that is ravaging my spine, and since x-rays of my hands and feet showed no arthritis, (a main diagnostic measure to test for rheumatoid arthritis) he dismissed me, not taking my or my spinal surgeons concerns seriously. It’s important to clarify that with AS the larger joints of the body are the primary joints affected, so I nor my spinal surgeon expected to see any severe problems in my hands or feet. The 2nd rheumatologist, who was part of a well know educational hospital system, shocked me when she didn’t look at any images, didn’t order any blood work, had her student take my entire history, barely talked to me, took some measurements of my spine (post spinal fusion which put my compromised spine back into the correct position) and because my measurements were not drastically altered, she assumed I didn’t have any auto immune disease and dismissed me to go home. Finally, after seeing an eye doctor for headaches and blurry vision, which he told me was due to the fact that my eyes were so dry and full of inflammation that if we couldn’t get the dryness and inflammation under control I would lose my vision. He treated me for several months and we tried every possible treatment that currently exists that he could prescribe. Finally, he told me he thought I had an auto immune disease called Sjögren’s syndrome, so he referred me to what would be the 3rd rheumatologist in 3 years that I would see.
The 3rd rheumatologist has turned out to be amazing as she has listened to all my symptoms, reviewed all my actual MRI and x-ray images not just the reports from the imaging, and spent 3.5 hours with me at my first appointment. She knows enough as a rheumatologist to know that most women with AS do not have ANY positive blood or gene markers, men do, and since AS is 3 times more common in men than women, the statistic that most think is 90% of AS patients have positive markers, should actually say 90% of men with AS have positive blood and gene markers. This was something despite all my research I had never run across, when I asked her why, she said it’s because for a long time it was thought AS only occurred in men, so it was never looked for in women who presented with the same symptoms. Despite more people having AS than rheumatoid arthritis, MS, Lou Gehrig’s Disease, Lupus, or ALS, knowledge of this horrific disease is extremely limited. This new rheumatologist also ran the entire spectrum of blood work on me and like she expected all the markers except my C-reactive protein were normal and my C-reactive protein was only slightly elevated and didn’t reflect the true amount of inflammation that was invading my body just as she had speculated it wouldn’t. After receiving the blood work back to rule out any other possible auto immune diseases other than Sjögren’s syndrome which I have, and is often co-occurring with another auto immune disorder, she officially gave me the diagnosis of AS which verified the diagnosis my spinal surgeon had given me 3 years earlier. Giving me the official diagnosis has allowed us to officially start the long painful process of finding which med or med cocktail, that I will take the rest of my life, that will work the best to reduce my pain and slow the progression of this incurable, extremely painful disease.
I am thankful that we finally found one of the “great” rheumatologist and that I am now getting the vital treatment I need, but I am also extremely MAD because over the last three years my symptoms have progressively gotten worse while I wasn’t getting the treatment I desperately needed, had the 1st 2 doctors actually listened to me, the patient and their colleague another physician, actually looked at the actual MRI images as I asked them to and not just the reports which didn’t show the severity of my spine according to my spinal surgeon, and had taken the time to do a complete history on me as all good doctors should, I would have been officially diagnosed 3 years ago, been able to start treatment 3 years ago, and could have slowed down the progression of the disease and delayed the onset of the disease in my jaw, shoulders, ribs, hips, knees, balls of my feet, my heels, as well as slowing down the severe damage to my eyes which I have had develop since first getting diagnosed by my spinal surgeon over 3+ years ago. I tell you this not because I want your pity, but because I want to get the word out to other women who may be unnecessarily suffering more than they should have to and not even know it. I have always believed that if you know something is wrong with you or your body, don’t take the no’s you get from a doctor who is likely less than competent and keep searching until you are able to find the type of doctor who will listen and treat you as a human being and not just a number. 2 doctor’s, 1 of which worked at a highly esteemed, highly sought out medical school and hospital, didn’t treat me as a human being when they dismissed me because I didn’t exactly fit their cookie cutter molds of what a patient with AS should present with. By doing so, they have irreversibly damaged my body and affected my quality of life. What a lot of people who have possible auto-immune disorders don’t realize is that the very expensive, full of extreme and possibly deadly side effects, biologics, can only be prescribed by a rheumatologist because of their side effect severity and extremely high cost. One dose of most biologics which you take weekly or bi-weekly via an injection cost $1500 per dose, so with taking 4 doses a month, these meds cost the insurance company or non-insured patient $6000/ per month, if taking 2 doses a month it costs $3000 dollars a month, If any doctor could of prescribed the biologics I so desperately needed, I am positive my spinal surgeon who was certain of my condition from day one would of prescribed it back then for me.
I am adding several images about AS to this post as well in hopes that I can highlight the need for Individuals to help raise money and support for this life altering, all consuming disease for which there is no cure. More people have AS than rheumatoid arthritis but yet improvements in diagnosing AS haven’t improved in over 40 years. The typical time it takes to diagnose this horrible disease is 6 to 10 years from the onset, but the fastest and most severe irreversible damage occurs for AS patients in the first 10 years of having the disease which makes this extremely long diagnosis time unacceptable for the patients battling AS. It is my hope that by sharing my story with those of you who know me personally and even those of you that don’t, that you will realize the need for support of research for AS so that better diagnostic methods and treatments can be discovered and put into place so that hopefully newly diagnosed AS patients down the road can get a diagnosis quicker and get their disease managed before the most severe irreversible joint damage is done, prolonging the onset of severe symptoms which will allow them to maintain their mobility for longer which will ultimately lead to a longer and better quality of life.
