This is Spinal Tap: My Sister has Multiple Sclerosis

Monday, February 13, 2012

It started around Halloween with dizzy spells that drove my sister Anna to the doctor because she couldn't stomach feeling suddenly light-headed and unsteady. She took two Z-packs to clear up what the doctor guessed was an inner-ear infection lingering after a sinus infection. But the wobbliness continued. Then there were the water pills to draw the fluid out of her ears. Perhaps those helped a little bit, but she still felt slightly off kilter. And while we were feeling optimistic that she was less likely to fall down (or up) the stairs, another symptom snuck in the side door. This time the loss of control was in her right arm, a sense of tingling and decreased muscle control. No inner ear infection symptom.

Sharing a peanut butter chocolate cookie with Dillon
That's when we began the journey in earnest to uncover the problem. Anna had an MRI ordered by her primary care physician. When the results came back, they told us simply that there were "abnormalities on the brain." For a week, we waited until the neurologist could see her. We waited with the possibility of tumors and cancer and unknown but devastating possibilities. When the neurologist finally saw her, we learned that Anna had a lesion on her brain most likely resulting from an autoimmune disorder. While multiple sclerosis (MS) was the primary suspect, additional testing would be needed to rule out other autoimmune disorders, namely lupus.

Back to the MRI she went for a THREE-HOUR stint in the tube for imaging of her brain, neck and spine. She endured quality time with a phlebotomist who drew 28 vials of blood for tests ranging from the possible culprits to the potential of bubonic plague. And then we waited.

It was the week after Christmas when the results came back. In addition to the primary lesion seen in the first MRI, Anna's neck and spine were peppered with smaller lesions. Her blood work showed a deficiency in B12 and folic acid. A subsequent blood test would reveal her Vitamin D levels were significantly below the norm. The lesions are indicative of an autoimmune response wherein the body attacks the myelin lining that protects the nerves. The missing vitamins are those that work together to repair the nervous system. And while most of the signposts in this round of tests pointed again to MS, her blood tested positive for lupus. To be definitive with a diagnosis, she would have to have a spinal tap. In the meantime, she was prescribed B12 shots, prescription strength Vitamin D and folic acid.

The spinal tap is the godfather of diagnostic tests. Also called a lumbar puncture it involves using a sizable, scary needle to poke a hole in your spinal cord and draw out some of the cerebral spinal fluid (CSF). Apparently, CSF is the Rosetta stone of autoimmune disorders. Anna, as you might imagine, was none too thrilled to be voluntarily allowing someone to root around in her nervous system.

This summer, we were chaise aunties.
And as fate would have it, the spinal tap did not go well. Anna experienced a rare side effect called a spinal headache because the hole didn't close properly and therefore, she spent four days leaking spinal fluid and incapacitated by excruciating pain. A secondary procedure was required to set her to rights.While it can be summarized in a paragraph, in reality it was a thoroughly awful and uncertain few days.

After that, guess what we did? We waited. And waited. For almost a month, we waited.

Week before last, the doctor's office called and confirmed a diagnosis of Relapsing-Remitting Multiple Sclerosis (RRMS). It is a relatively controllable form of the disease marked by periods of symptoms followed by a time of inactivity. This past week, with her return visit to the neurologist, she found out her treatment regimen. Anna will be taking Copaxane, a self-injected medication that has been shown to prevent relapses and shorten the period of relapse and the severity of the symptoms. So far, self-injection has been a little challenging to acclimate to, but she knows at this point that the stomach is the easiest place to inject. She will continue with the "vitamin cocktail" - the boost in vitamin helps her body to repair itself.

She requested a referral to The Shepherd Spine Center. While she has been really pleased with her neurologist, Shepherd is actively doing research on MS and may have additional insight in how to manage it.  It could be several months before the referral comes through.

Love this picture of me and my sis
So how is Anna doing? She is handling this with grace and a sense of humor that sometimes trends toward the dark side. She has, after all, been made into human Swiss cheese with all the needle sticks she's endured in the past couple of months. She's still working, still walking her dogs, still doting on our nieces and nephews. Anna is, after all, a survivor. And we have all been buoyed up by the prayers and support of our family and so many dear friends. We are deeply grateful for your love and concern.

Anna is one of the bravest people I know. She always has been. I mean, she's my big sister, and she's always made big footsteps to follow in. This time, though, I get to walk beside her and be someone to lean on, laugh with, complain to, and maybe, if necessary, a hand to squeeze during one of those needle sticks.

6 comments:

Andria said...

eloquent as always. so moving. Big (((((hugs)))) to you and Anna and the family. We are thinking about you and know the strength of your support system for each other is immense and will carry you all through, together.

m said...

love and prayers to you ash.

Nikster said...

Oh, Ash, the last paragraph is gutting. You're a great writing and a loving sister. I'm praying for Anna and you, and for Momma and Daddy Harp, and the rest of the fam. Love you so much.

Ivy said...

Team Harp's got this! ((rub))

jenn said...

Sniff! It's so good to know that the ever-present Harp love, strength, faith, and sense of humor is helping you all through, and we all know that Anna is one amazing woman! Sending lots of love and prayers for Anna, you, and all of the family!

Jenni said...

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