Julie’s NMO Story – Tingles & Tinkles

Five years ago, my oldest daughter and I were grocery shopping when it occurred to me that the grocery store looked foggy or smokey. When I asked her if she thought it looked the same, she gave me a “you’ve lost your mind” look. By the next day, my vision was gone in the left eye and the pain was excruciating. I was quickly diagnosed with optic neuritis, put on IV steroids, and told, “you will get better.” I did get my vision back but unfortunately, it will never be the same… 

Over the course of the following nine months, I experienced six relapses in my left eye. My right leg began dragging and tingling all the time and my bladder decided it would work only when it felt like it. After several tests and an MRI, I was diagnosed with multiple sclerosis and put on medication. I also received a Mediport (which I highly recommend) because all the IVs were taking a toll on my veins. 

As we all know, being misdiagnosed with MS is quite common in patients with NMOSD.  Unfortunately, not only did I not have MS, but I had a horrible reaction to the medicine I was injecting every other day. The medicine caused “serum sickness” and I was hospitalized several times over the course of two months and sent spiraling down into depression.

After all this, I was diagnosed with NMO, a disease I was told, “you really don’t want. The treatment is tough and we aren’t even sure how well it works.” At the ripe old age of 40, this mom of 3 plus a bonus felt like I had been handed a death sentence.  

My family is full of autoimmune processes. Even though I have been told more than once that these diseases are not hereditary, all three of my biological children and my mother have autoimmune diseases and have either had surgery or been hospitalized more than once for them. I, however, chose to “go big or go home”, so I have several. I feel like the domino-effect came into play because as soon as I found out I have NMOSD, several other autoimmune issues came to the forefront. I am a complex case and my doctors (who I believe are amazing) have sent me to other facilities for expert opinions and consultations. I have seen my doctors at Marshall University, West Virginia University, Cleveland Clinic, and the Mayo Clinic. Somewhere in all those visits, it was decided that I have NMOSD and once it was “officially” diagnosed it really started to show its ugly face…

My official diagnoses are: NMOSD, Sjogren’s Syndrome, Trigeminal Neuralgia, and Immunoglobulin Deficiency. My treatment regimen is a little extensive:

  • Monthly IVIG infusions
  • 2 Rituxan infusions 2 weeks apart every 6 months
  • Gabapentin for neuropathy
  • Nucynta ER for trigeminal neuralgia
  • Emgality injections for migraine headaches
  • Bladder irrigation nightly, self-cath at least 3 times a day for neurogenic bladder
  • Synthroid because I had my thyroid removed in 2007 for Graves’ Disease
  • Xanax as needed for obvious reasons

Out of all that, I will tell you that losing bladder control and function has been the bane of my existence, or at least my pride.

NMO will destroy more than just your body. For example, the day I found out that I had to self-cath, I was hurt, angry, and sad, but most of all, I allowed NMO to win. I fell into a state of depression and gave in to everything I had fought against for so many months.  

My husband, Todd, is my soulmate. He knows me and every one of my aches and pains. He knows what each facial expression means. Most importantly, he knew I was depressed and was determined not to let that happen.  

One night after telling our kids “good night” we had a heart to heart. He let me cry and we discussed  our concerns and decided that we would not let NMO beat us. He pledged to stand by me and find a way to fix this. In the course of our conversation, I mentioned to him that my mom and dad had always encouraged me to write. This is also the point where Todd encouraged me to write a blog. He said that by writing about my experiences, I could not only fight what was happening to me, but that I might be able to help someone else and bring awareness to this horrible disease.

Todd may not realize it, but he gave me a purpose. I began writing, used lots of humor (or at least I think its humorous) and slowly come out of my depression one word at a time. I created a FB page and blog, “Tingles & Tinkles”. I try to take all my personal experiences with this horrible disease and laugh about them.  

The only way to beat this evil monster is to not let it beat you. Encouragement and laughter go a long way. I have so many “it’s better to catharize because….” ideas, and they just keep coming! 

It has been almost a year since my last bad relapse and I know it is because of my support system. Find your tribe and love them hard! Even when you are exhausted and kicked up in your recliner, let them rally around you. Let them help you win. We all know the obstacles we are facing, and we know that NMO will not relent.

Use your tribe, your God given blessings and take whatever NMO throws at you and throw it right back!