It has been over 2 years now when i became diagnosed with Neuromyelitis Optica (NMO). I like to refer to it as my Independence Day.
Neuromyelitis Optica (NMO) is NOT Multiple Sclerosis! NMO is a rare, usually relapsing, inflammatory demyelinating disorder that primarily targets the optic nerve and the spinal cord. That being said, NMO has many symptoms in common with MS. This in my option, is why in many cases of NMO are first diagnosed as MS. A lot of doctors and research scientists think that as well. However, NMO is treated in different ways and early detection and treatment can help ensure the best outcomes.
In my case, I was diagnosed with MS first and started a drug treatment using an interferon. Interferons are like defensive linemen on a football team. They keep the other team away from the quarterback. Like in football, if the quarterback is already hurt, the defense is not going to heal him. Interferons block the bad from attacking but they can not fix the damage that has already happened. As first this drug treatment worked ok however less than a year later it took a turn for the worse. I had a few relapses. At first not noticeable to the outside world and then noticeable to my close friends/family. I did not have the pep or skip in my step. All I wanted to do was lay down. Walking was terrible, my legs tingled for hours after a short walk, I ached all over and if it got over 85 degrees it felt like my skin was on fire. During this time my neurologist was testing my blood for something he called NMO aka Devic’s disease but the standard blood test did not show any signs. My MRIs however did show signs and it was pointing to this new rare acronym that I had renamed NMM or “No More Moe”. The MRI showed lesions primarily attacking my optic nerve and spine and did not show lesions on my brain. Of course when I read about NMO and the parts of my body that were under attack, (Thank you to “The Google”) I go straight to the “weeds”. Side Note: The “weeds” is a term, a dear friend likes to use to describe my personality as I can go from 0 to 60 in 1.2 seconds (0 = calm and 60 = the world is going to end).
Now back to the “weeds”. I started to research the random. Things like how to learn braille (as I am going to go blind) and learn how to work a wheelchair (as I won’t be able to walk). In addition, I start researching contractors as the house will need to fitted with ramps and a new bathroom for me to shower and brush my teeth. Oh and all the kitchen counters will have to be lowered and I need to figure out how to storage oxygen because I might not be able to breath properly one day. Oh and I need to look into long term care insurance and make sure that I can get to and from my job. Will I still be able to work? What if I can’t get health insurance? How will I watch all the Fall TV shows? No more foods that I love (Red Wine, Cheese, Bread, Chocolate). I need to get a library card because books on tape are expensive and I can get them at the library for free. Yes, the frugal part of the brain did not seem to be damaged at all. The list goes on and on until I finally break down and cry. Silent tears that I try to wipe away but they still keep pouring down my face. What now Moe?
This is all happening while I am at the hospital in the infusion center. The infusion center is a place where people, who have all sorts of ailments, come and have drugs pumped into their body for hours and hours. Most of the patients come for chemo treatments various types of cancer and some like me are hooked up to high dose Solu-Medrol, a corticosteroids to help reduce the inflammation. I go through this when the blocker drug is not working. It is the first day of five days of infusions to stop the current round of acute exacerbations from whatever it is that I have now. This is where I break down, all alone with only my tablet and 20 or so other patients getting infusions. Everyone has a story, most suck more than mine.
Side Note: Avoid taking your tablet with you to your infusion appointments. Take a book, a magazine but do not take anything that get gives you access to the internet. It is a recipe for a nervous breakdown. This is the only time that “The Google” was not my friend.
It is after this round of steroid infusions, then another drug for MS called Tysabri (natalizumab), then finally another flare up followed up by lovely spinal tap on Christmas Eve and several conversations with my doctors, it is settled, everything seems to point to NMO. Ok that is great, What now? What now, is that another year has gone by and I am feeling worse and I have another new thing to obsesses over. To the grammar police, Yes, I ended a sentence with a preposition, deal with it.
The good news is that there is an off book treatment for NMO and my insurance approves. The bad news is that I have to wait at least 3 months to clear the drugs I was taking to get out of my system. But more good news is that I only have to take this drug 2x each 6 – 9 months. The bad news is each time it takes about 6 hours at the infusion center, then wipes me out for 2 or 3 days. Then again 2 weeks later the same routine. But again, good news, I don’t have to go back for 6 – 9 months. Oh yeah, more bad news, the drug, rituximab, destroys all my B cells. It is some of those crazy B cells that are attacking my healthily B cells. So we just go and destroy them all. This wouldn’t be a big issues except for that B cells are what keeps cold and flu away. I now have a weekend immune system and a minor cold and flu turns into a major event. But again, more good news, after 2 years, this drug is actually working minus a few colds that turned into a week in bed, it has been good.
So, where can you go to learn more about NMO? I was referred to Guthy-Jackson Charitable Foundation. The Guthy-Jackson Charitable Foundation is dedicated to funding basic science research to find answers that will lead to the prevention, clinical treatment programs and a potential cure for Neuromyelitis Optica (NMO) Spectrum Disease.
What I found was not just a website with facts and figures but a safe place, a community, a family that has both empathy and sympathy for all the crazy that is going on inside me. Helping me understand and work with my limits and challenges both physically, mentally, emotionally and spiritually. There might not be a cure at this time but there is real progress. My hope for the future is so much more optimistic then it was when I was diagnosed. It now takes me 9.7 seconds to go from 0 to 60. I would say that is progress.
Another year has come and gone and here we are again. Here where the beginning is the past, the present is the future and I have 4 new ways to make mashed potatoes without using potatoes.