Christmas of 2020, my husband and I were driving from Montana to Arizona and we were listening to an audio book and something in it sparked me to ask my husband, if he had to pick losing his eyesight or his hearing, which would he choose. I chose eyesight because at least I could see what was going on. Little did I know what I had in store for me in the following weeks.
December 18th, I woke up with a headache that has literally never left. I really thought nothing of it. It was just a headache. Fast forward a couple days and I broke a tooth and the headache became worse and of course I blamed it on my tooth. We made it to Yuma and the first night there I woke up with what I thought was the most excruciating migraine of my life, even though it was unlike any migraine I had ever had. I had eye pain, but this wasn’t anything like the eye pain I had experienced before with migraines. This time when I would move my eyes, it literally felt like my brain was being pulled on. Again, I assumed it was from my tooth. My mother-in-law set me up with her dentist and I was on the mend – or so I thought. The headache never went away. The eye pain never went away. Something in the pit of my stomach told me that something was really wrong, but I pushed it to the back burner.
We returned home on January 4th. The next day I woke up with a weird tingling feeling on the left side my torso and the eye pain in my right eye was off the charts. Thinking I was just tired from the trip I decided to wait a day and see what happened. I felt worse that next morning, so I went to urgent care and was told it was possibly the shingles and my eye pain was an ocular migraine. I was prescribed an antiviral for the shingles and he told me to come back on Monday if things weren’t better. By Monday my entire torso felt like I had been beaten with a baseball bat. I couldn’t walk normally; I was hunched over and my normal walk was now a shuffle. My eye pain was worse, and you could actually see that my right eye was swollen, and it was sensitive to the touch. At this visit the same provider said I actually didn’t have the shingles but instead I had a kidney infection and probably a blown disk in my lower back. I had an x-ray on my back and it was completely normal. As for my swollen eye and vision loss, it was fine. Just a migraine. He sent me home with an antibiotic and a muscle relaxer. The next day I woke up completely numb from the torso down, I could barely walk without assistance and my vision now reminded me as if I was looking out the window through a set of blinds. I said, “Forget urgent care, I’m going to the ER!” That ER doctor ignored my eye pain and vision loss and took a cat scan of my back that he said looked completely normal and sent me home with a prescription for a multivitamin. A multivitamin!!!
I felt like I was in the twilight zone and questioned myself if these symptoms were all in my head. I honestly felt like I was crazy, but I knew something was actually wrong with me. I just needed to find someone who actually cared enough to figure it out.
Over the next 7 days the vision in my right eye just continued to worsen and my left eye started to fluctuate from normal to blurry. On the 8th day I woke up to zero vision in my right eye. I laid there for a half hour telling myself that this wasn’t real. After I came to terms that this was actually reality it was back to the ER. It’s a whole new ballgame when you show up to the ER blind. I had a nurse trying to get an IV in my arm as another was trying to wheel me to radiology. I was told that the MRI showed my brain and optic nerve were swollen and they started me on my first dose of IV steroids. They didn’t really give me any idea as to why my brain and optic nerve were swollen and sent me home with the instructions of seeing an eye doctor the next morning. The eye clinic had me come in right way and didn’t waste any time running me through a bunch of tests. Most of them the nurse had to place my head in the correct position and tell me what to do because I couldn’t see where or what I needed to look at. After the testing was done, I had 3 doctors looking at me explaining that I had optic neuritis and then they dropped the bomb on me that optic neuritis is usually the first sign of MS especially when I was presenting with the numbness from my torso down along with a bunch of other symptoms I had. I just lost my mind at that point. MS? Me? What? I learned that day that I literally had no clue what MS was.
Over the next couple days, I finished my first 3-day round of IV steroids and started on a daily oral dose. I saw a neurologist a few days later. By that time, I needed a wheelchair. I honestly had high hopes for that neurologist at that appointment. He wasn’t satisfied with the MRI from the ER, so we set one up for the following week under sedation. He also ordered more blood work. Since I am a chronic fidgeter even under sedation I still moved too much during that 2-hour MRI, so we scheduled another under anesthesia for the following week. By that time my vision in my right eye had gone from pitch black to gray and I was starting to see some shapes. Then the morning of the MRI, I woke up to blurry vision in my left eye and the same feeling of my brain being pulled when I moved my eyes. I was just devastated. That afternoon I started my second round of IV steroids for optic neuritis. A few days later the neurologist told me that my MRI looked fine and I didn’t have any lesions on my brain or spinal cord, and I showed no signs of MS. The next step was I needed a spinal tap and more bloodwork to continue ruling things out. A couple days before the spinal tap, I woke up again to the same eye pain and vision loss, this time in both eyes at the same time. So here we go for round 3 of steroids.
Once my results were in, I was told, the spinal tap looked fine and the labs looked fine. I was told to just continue on with oral steroids and we will just see what happens. That didn’t sit well with me. How was it even possible all of these things were happening to me and he said I was fine? I was not fine. Another 2 weeks went by and another relapse happened, so we started round 4 of steroids. I was then told I had an autoimmune disease called CRION (Chronic Relapsing Inflammatory Optic Neuritis) so I was given daily steroids and again told they will see what happens.
Just see what happens…that’s always what we want to hear when it comes to our health.
Like clockwork every 2 weeks another relapse would happen, I would do another round of IV steroids and then up my daily oral steroids a bit but in 2 weeks the cycle would just repeat. I had 9 relapses in 5 months. I finally decided that I needed to go elsewhere. The, “everything looks fine and we will just wait and see what happens” approach just wasn’t enough for me. It was obvious I wasn’t going to get any help in Montana and one of the eye doctors had mentioned University of Utah for a second opinion. I requested a referral and after reviewing my records, I was placed with two different physicians in Salt Lake City, Dr Galli who is a neurologist and an immunologist and Dr Warner who is a neuro-ophthalmologist. I scheduled a telehealth appointment with Dr. Galli for May 4th and hoped I was making the right decision.
Then one morning in late April one of my eye doctors called me super-early and told me he had been reading a medical journal the night before and it talked about this rare disease that he hadn’t even heard of called MOG Antibody Disease (MOG-AD) and it sounded just like my case. He told me he had no idea what test he needed to order but he was going to find out and get me tested. Of course, I started googling and learned that MOG was a neurological immune mediated disease and attacks the optic nerve, spinal cord and brain. While we were waiting for results, I had my first telehealth with Dr. Galli, and I knew within 5 minutes that he was going to change my life. I have never had a doctor be so invested in me and my history. I did in fact have lesions on my brain, 6 of them actually. That call was over an hour long and I felt so much relief. I scheduled to go to SLC and see Dr. Warner for testing and then the two of them would decide what my treatment plan was going to be.
In the meantime, my test results came back and I was in fact positive for MOG antibody disease.
It was a fairly new disease that they were still learning about and the testing for it had only been available for a few years. There were no FDA approved medications for it, so you are given a handful of treatment options and figure out which one works for you. Finally, it was time to head to Utah for my appointment with Dr. Warner. I was so nervous that morning, I had been let down so much by doctors in the last 5 months that I was just so scared of being let down again. I heard my name called and assumed it was a nurse to bring me back to the exam room, but she held out her hand and said, “Hi, I’m Dr. Warner”, and I immediately felt the anxiety leave my body. I couldn’t believe how lucky I was to be placed in the hands of these two doctors. I still can’t actually. After a couple hours of tests, she told me that she believed my initial attack wasn’t solely MOG antibody disease but also a disease called Transverse Myelitis and it isn’t uncommon to have both. She then called Dr. Galli on speaker and they decided right then what treatment was best and the order was sent to my insurance that day for approval. I had some bloodwork done before I left and back to Montana I went. A couple weeks later Dr. Galli called saying my labs showed that the treatment we had decided on would be too risky for my health at that point, so we moved to the next option which meant sending another order to my insurance for approval. Another 3 weeks went by and I finally got the phone call that the request for IVIG was approved and I was able to start the next week. I was scheduled for an infusion 3 days in a row, then once a week for 6 weeks, then every other week for 6 weeks and then monthly. Days 1 and 2 went really well but I didn’t make it for the 3rd day because I was so sick, but after a few days I was back on my feet and then we started the once a week schedule. That next 6 weeks was probably the best I had felt in a very long time. That combination of oral steroids and IVIG was amazing. My head and eye pain decreased, my overall pain was better, and my limp was going away. As we moved into every other week schedule, I started to taper off the steroids, which I was extremely excited about. Of all the awful side effects that steroids can cause, I was very lucky that I didn’t really experience them. My only real side effect was the steroid moon face. At this point I had lost 40 pounds and I looked like I had gained 40 pounds in just my face. Once I was off the steroids completely and moved to every other week schedule, I noticed my symptoms slowly returning but I tried to remain positive and told myself I just needed to trust the process and let my treatments do their job. I was able to start driving again the end of September and that was so exciting. Having to ask your 23-year-old daughter to drop you off at the movies wasn’t what I expected at this age.
Once I moved on to a monthly schedule, I was gradually starting to have more bad days than good days in between treatments. I was and currently still feel like I am teetering on another relapse. I returned to Salt Lake in January with appointments scheduled with both doctors. My appointment with Dr. Warner was great, my color vision was almost back, and I only missed one on the color test. I finally received a prescription to get some glasses in hopes they would help stabilize the fluctuation with my vision. I never thought I would be so excited to get glasses again after 16 years of perfect vision thanks to Lasik. My appointment with Dr. Galli was the next day but COVID-19 had struck his house and we scheduled a telehealth appointment with him the next week. At that appointment we discussed my ongoing symptoms and possibly switching to a different treatment. He ordered an MRI and they couldn’t get me in for 6 weeks and as I type this it’s been 4 weeks and we are still waiting for my local hospital to send the records to him for review even after numerous requests. The health care system is just so frustrating. Then a couple weeks ago I came down with a stomach virus that we are assuming activated another relapse. This time it left my eyes alone and only effected my lower half and I am currently back using my walker and cane. Then just a couple days ago the glasses I was so excited about getting just stopped working for me which is just discouraging. So, now I am trying to be patient and wait for more answers.
To say this disease is frustrating is putting it mildly, it is so unpredictable. Going to bed at night not knowing if I am going to be able to walk or see when I wake up is scary. Having a disease with symptoms that you cannot see is very frustrating. My symptoms may not be visible to anyone, but my daily symptoms never go away: nerve pain, eye pain, ear pain, head pain, neck and back pain. I am still numb from the waist down and for the most part, I can feel the bottoms of my feet. My arms and hands fluctuate back and forth. Since you can’t see my symptoms and numerous doctors just flat out ignored them, I feel like half of the time people don’t believe me or think I am exaggerating. I know that 98% of the time it’s all in my head because I do have a really good support system. The reality is some days I feel like I am doing good and others I just feel defeated. I do for the most part try and keep a smile on my face…. some days are just harder than others. Especially since now when I smile my face and mouth twitch like crazy and drives me nuts!!!!
We have all heard that negativity only breeds more negativity, so I want to share what I am thankful for through this journey. I am so thankful for the medical team that I was placed with in Utah. Dr. Galli and Dr. Warner, I really hit the jackpot with them. I am thankful for my family and friends for their support, the million rides for the 9 months that I wasn’t able to drive, listening to me in my lowest times and just checking in on me. I am thankful that I have job that allows me to work from my living room or the infusion room. I am also so very thankful for the health insurance that my job provides, I don’t even want to think about where I would be without it.
I am also thankful for The MOG Project and the MOG Facebook group that I have found.
Sharing stories with people that have been through exactly what I have is a blessing. I have learned so much from the people in that group. I am thankful for my eye doctor Dr. Barth for reading that article and finding out what was actually going on with me. I am thankful for the nurses at the infusion room at the hospital, they are the best and even though I only go there because I am getting treatment that I don’t enjoy, I do enjoy seeing all of them.
It took me a while, but I have come to terms that my life will never be the same as it was and I just have a new normal now. I am left with permanent damage that I have to learn to live with. Even though I do not know what the future holds for me or this disease, I do know that I have the best doctors helping me through it. I pray that the research leads to a treatment that works for all of us. I also know that you are the only person that knows your body and if you are struggling with something and being treated like I was, please keep pushing for answers until you find them.
You are your own advocate.
One doctor’s opinion is never the final answer.
One doctor ignoring your symptoms is not the end of your story.
There are doctor’s out there that will take the time listen to you and invest in you.
You just have to have faith and you will find them.