Hello, you guys!
I am so ashamed of how long it has been since I posted last. A lot has happened that I was not prepared for, which kind of has a lot to do with what I want to talk about today.
Please forgive me in advance. I'm not in my right mind and I know this post is not written well. I'm struggling to keep my thoughts in order.
Initially the reason I was absent was because my little family and I took a mini vacation to the Kansas City KS/MO area! We actually stayed in Olathe, KS which is about 23 minutes from Kansas City. We had a wonderful time! I'll take time to go into detail on that in a later post.
I mentioned in my introductory piece that I was facing a possible multiple sclerosis diagnosis.
Unfortunately after coming home from Kansas and finally meeting my neurologist, I learned I'm possibly facing something much worse than multiple sclerosis. I didn't think that was possible.
I'm going to assume that because of how rare this disease is, most of you have never heard of it. I'm probably going to talk to you like a clueless little baby, but if anyone has experience with this disease, PLEASE FEEL FREE TO CORRECT ME. I WANT you to correct me!
So... This is called neuromyelitis optica, nmo, or Devic's Disease - whichever you prefer works for me. Neuromyelitis optica is an auto-immune disease that typically attacks your optic nerve and spinal cord instead of your brain, unlike MS. Nmo's "attacks" or "episodes" are quite more severe than those in MS, and tend to be much more disabling. In fact, right after my neurologist told me he thinks I have this, I learned that 30% of people who have untreated/undiagnosed nmo DIE WITHIN THE FIRST FIVE YEARS OF HAVING IT!!!!!!! Please re-read that sentence and let it sink in.
Being an almost wife and a 20 year old mother to a toddler, it's very safe to say that learning that stopped me in my tracks. If I have it, we're catching it now, so I don't think I'm going to DIE right now. (That sounds so dramatic and silly to me. 馃槱) But I've got a very good (and by good I mean BAD) chance of either going blind or being confined to a wheelchair before I'm 30.
I want to talk about all of my symptoms and what lead to nmo being brought up so maybe I can help others who have an unexplained illness.
Almost a year ago I started having severe lower back pain. It was shooting pain that was primarily in my lower left back and would shoot down through my leg and to my toes. I also had an awful shot of electrical pain that would go down my back when I looked down and touched my chin to my chest. That "shock" from looking down would bring tears to my eyes. I got to where I couldn't walk without limping and/or crying.
I went to the closest emergency room when I decided the pain was too much to handle. Because I had recently moved a couple couches for a charity, the ER doctor assumed I had herniated discs (disks?) and sent me home and told me to follow up with a doctor.
Well, I'm ridiculously poor these days, so I didn't go to the doctor immediately. I didn't think herniated discs were that serious and I didn't want to cough up money for a copay.
A month or so went by and I couldn't walk at all. My daughter was staying with my mom almost every day because her dad works night shift and I couldn't take care of her. My mom and nana kept saying "Oh yeah, back pain is bad. We've had it, we understand, blah blah blah." I was annoyed because I felt like they were mocking me and did not truly understand my pain, but kept those thoughts to myself.
Then I started going numb. I started going numb from my panty line to my toes. I would tingle, burn, and have pins and needles at all hours of the day whether I was sitting, standing, etc. I especially went numb in hot water. Shortly after that became a daily occurrence, my arms started going numb. It would start in my fingers and go up to my shoulders. Sometimes only the underside of my arm would go numb and the top would feel normal. And then my face went numb three times.
At the time I didn't think twice about the numbness. The only PAIN I was feeling was in my back, and as far as I knew I already had a diagnosis of herniated discs. I eventually made an appointment at Texas Spine and Joint and was referred to a spine specialist at Precision Spine Care. I explained my numbness to the specialist, along with my back pain and also that I was having trouble urinating despite not having a bladder infection. He said he didn't think I had herniated discs at all; he thought I had something neurological. He told me to go to my PCP and have her order an MRI of my brain. I told my PCP that the specialist wanted an MRI of my brain and after learning my symptoms she said it sounded like MS and was very concerned.
I also hadn't been able to see in weeks but didn't think anything of that either because I have never been healthy. I had a routine eye exam the day after seeing the spine specialist and I learned I have optic neuritis. When I told the ophthalmologist I was being tested for MS, he had a very strong sense of urgency and made me wait there until he could get ahold of my doctor to tell her I have optic neuritis which was another indicator of MS. He said the MRI of my brain wasn't enough and that I needed a spinal tap, too.
I was able to schedule my MRI and spinal tap together on March 31 of this year. Shortly after that I started waking up numb. I was so numb in the mornings (and still am) that I couldn't get out of bed. I would wake up with all four of my limbs tingling and my head was so heavy I couldn't lift it off the pillow. I would just lie and stare at the ceiling for hours until it stopped. Or I would call for help and someone would have to drag me out of bed and carry me to the bathroom or couch.
And then I started getting dizzy and my vision started to completely fade in and out. On top of all that, I was so fatigued I couldn't do simple tasks like cook dinner, give my daughter a bath, or go buy groceries.
The MRI and spinal tap came back normal and I was referred to the neurologist.
The week before I met him, I had two scary incidents. The first was mild, but scary. I was in bed writing my symptoms down for my upcoming appointment with the neurologist. I heard a noise and turned my head to look to my right. By simply turning my head sideways, I became so dizzy I completely rolled out of bed and hit the floor, meanwhile losing vision in both eyes for about ten seconds.
The second episode was terrifying. We'd just driven home from Kansas so I was a little sleepier than usual. I went to bed that night and slept for 12 hours. I woke up and I was tingling so badly I couldn't feel my body parts enough to move them. It felt like I didn't even have a body... It was like I was just "there"... I couldn't get out of bed, couldn't talk, nothing. I was paralyzed. I couldn't stay awake for longer than 10 minutes at a time so before I could get anybody's attention to tell them something was wrong, I was already back asleep. My boyfriend eventually caught on that I was not acting normal and kept asking if he needed to call an ambulance. In my heart I knew I needed to go... But tornadoes had ripped through the area a couple hours before and killed multiple people. It was still storming and I didn't want any of us to have to be on the road in that chaos. So each time John would ask, I would just shake my head no. That was all I could do. My brain had pins and needles. I stayed in the same spot without moving once...for 25 hours. I could not have gotten up even if there was a fire or a burglar. I was truly stuck in bed.
My appointment was two days later. I explained my symptoms, we did some little tests and that's when my neurologist said he really thinks I have nmo. Apparently it's so rare that a lot of doctors have never even heard of it. There are about 200,000 people in the U.S. who have MS, and about 4,000 who have nmo. And it is to my understanding that there are only three hospitals in the country where nmo patients can be treated. One in Dallas, one in Scottsdale, AZ, and the other at the Mayo Clinic in Minnesota. My doctor sent me to the lab for the nmo antibody test - and the nurses there had never even heard of the test and had to search for it in their database. I'm hoping they did it right.
The blood test was on May 03 and I'm already noticeably worse. I've started having uncontrollable spasms throughout my body that last for several minutes. My arm shakes uncontrollably and everyone can see. I also woke up the morning of May 3 with a hurt leg and have woken up with it a little worse off everyday since then. I don't think I can walk on it much longer. My eyes are killing me.
I am having an MRI of my spine on 05/16/17 to check for lesions that correspond with nmo. My blood test should be back around that time, too.
At this point I'm playing the lovely waiting game. I genuinely hope I don't have this, but I literally have every symptom. Since there's no cure and because of how disabling it is, I'm very scared. Apparently each attack does great damage, so every time a new attack occurs you're closer and closer to being in a wheelchair or blind. It's got a very rapid progression if not diagnosed quickly.
I can feel how much I have deteriorated. I can see the way my family looks at me and I can hear them whisper about how much I have changed since September. I see them hurry to wipe years away when I enter the room. And I can see in my daughter's face she knows something is wrong. I know I am not myself.
I feel like I know in my heart I have nmo. If I don't, I will be insanely happy... But I have almost accepted that this is what's wrong with me.
There is more that I'm dying to say but I have to constantly take muscle relaxers to survive and now I can't keep my eyes open. I will be back soon. But I wanted you all to read this so maybe you'll pay closer attention to the warnings your bodies are giving you.