After all, my first neurologist wasn't convinced it was Multiple Sclerosis. He thought my neurological symptoms were the result of a Humira injection (just one, single injection) that I had been given following a clinical diagnosis of Ankylosing Spondylitis. He said he had TWO WHOLE PATIENTS who had reacted that way, and their issues had resolved eventually. He was sure, since I had no active enhancing lesions, that my symptoms would resolve, too. He was even more conflicted after my Lumbar Puncture results came back showing no oglioconal bands or Myelin protein in the spinal fluid. I had other positive results, though, so he opted to be "safe" and send me to an MS Specialist for their opinion on the matter.
(Cue the LOOOOOOONG wait time for a specialist visit at University of Texas Southwestern MS Clinic.)
Then, on January 4th, I sat in a cozy little exam room with my husband and Dr. Shanan Munoz, a neurologist with 26 years of experience diagnosing and treating MS, and heard her say, "This is all classic MS."
Classic MS.
The lesions. The symptoms. The facial nerve pain. Dropping things. Leg weakness and heaviness. Memory loss. Problems speaking. Dizziness. Fatigue.
It wasn't the result of a Humira injection, and I've probably had it for a while.
"You have Relapsing Remitting MS."
It's not something else. Your symptoms may lessen, and steroids may help on occasion, but the neurological issues you have now likely won't go away.
You'll always have to write things down so you don't forget to do things.
There is no medication for the skin numbness (which is apparently called "paresthesia") you feel during intimate moments with your spouse.
There is only a 52% chance that the medication we're going to use will prevent current lesions from growing, or prevent more lesions in the future.
There's no cure, but they're working on some things. Clinical trials are "promising."
"But, hey," she said, "This isn't going to ruin your life. Your prognosis is good. I have MS patients who ride 150-mile bike rides, in the heat."
The rest of the visit I felt almost numb...and I continued to feel that way in the weeks following. Like I'm walking around in a fog. Like this isn't my body anymore. Like I've been taken over by someone I don't know, an alien invader, a body-snatcher.
It's been 22 days since I heard her say these words to me. I've had issues with nerve pain medication, followed by a flare that put me at the Urgent Care clinic getting a Sodium/Steroid IV and taking Prednisone for 9 days. I've gotten approved for Gilenya and that whole process for starting the meds is in the works. I've done research...bought the book "Multiple Sclerosis for Dummies." We've talked to our daughter, who is 8. I'm not sure how much she understands right now, but we'll get there.
These days, I'm still not sure how I feel about it. I guess it's a mix of feelings...numb...angry...and confused. The absolute picture of health - competitive athlete, healthy diet, plenty of rest, great family support system - freaking Certified Personal Trainer. And somehow, this beast of a disease, this brain-eater, found me. I still don't get it. I don't like it. And I don't really feel like sitting down and letting myself process it and accept it. I'm just in survival mode. I can't let myself think about the future - like what might happen if MS jacks with my eyesight, or causes incontinence, or causes me to lose function in my legs, or arms. What if I start having seizures? What if I'm in that small percentage of people who take Gilenya and get a serious brain infection? What if any one of these things happens and my kids don't see me as the active, involved mother I am right now? How will their little brains process it?
These are the thoughts I can't think right now. So when they pop up, I quickly push them far away into the recesses of one of my lesions and bring my mind back to what I'm doing in this moment.
But I know what I DON'T want to do right now. I don't want to walk around singing with small animals in the forest like freakin' Snow White saying, "La-la-la, my life isn't OVER! I'm going to live a wonderful, amazing future, because the doctor said I would!"
I want to sit here, processing (or refusing to process it) just like I am for now.
This isn't a test. This isn't a false alarm. This is real shit, ya'll. And I'm gonna take my time working through it...
EK
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