It started feeling like an electric shock. Every time she lowered her chin she’d fell the *bang* and tingle in her feet and hands like she had been shocked. “Odd,” she thought. “Maybe I strained something in my neck or back having the baby.”
But it got worse.
Soon her feet and hands were tingling with regularity. And the doctors were no help. Her first primary care physician did not want to give her a referral to a specialist, and then when he did, he did not even pick the right specialty. No useful diagnosis was received and the tingling was getting worse. Sometimes her leg dragged when she tried to walk, and often she was so tired she did not want to get out of bed.
But she had to get out of bed. The new baby had to be fed.
Two PCPs later, she found someone who did a proper neurological exam, recognized that she needed to see a neurologist, and was willing to make the referral. The neurologist pretty much knew what he was dealing with, but the testing was inconclusive, so he did not want to say. The diagnosis can be too alarming. Sometimes, things like this go away and never come back. He prescribed IV steroids followed by an oral steroid taper.
So, she took her infusions, tolerating incompetence from the home infusion company that had to be told every time that she had a latex allergy, that never seemed to send anyone who could find her tiny veins, and never seemed to have the premie infant needles that alone seemed to fit her. Then she took the oral steroids and dealt with the mood and personality changes, and the burning of her stomach.
And she took care of the baby.
The symptoms went away. Maybe they would never return.
But they did. One year later. And this time they were worse. Numbness progressed from her feet, up her legs and to her midriff. Her left leg became week and even her arms became numb and unpredictable. One day the bank called because one of her attempts to sign her name was no longer recognizable as her signature. And don’t even think about playing the flute anymore. The fingers will not obey her commands.
And then there is the baby--now a toddler. Her husband left for work every day at 6:15 to make his long commute. She asked to be awakened every day to test her limbs. She was afraid of waking up paralyzed and unable to lift the baby from her crib.
This time the testing left nothing to the imagination. This girl who hated needles gave blood, had a spinal tap, and had an MRI. They confirmed what the neurologist had not wanted to say before.
Multiple Sclerosis--a potentially crippling disease with no cure.
She thought first of the baby. Will she have it too? No. Probably not. Will mom be able to be a mom for as long as she needs? Probably, but the disease is very unpredictable. Is there anything to be done? Only somewhat. There are some drugs that appear to statistically slow the disease that did not exist 10 years ago, but they don’t always work and they can lose their effectiveness.
There are three main drugs--pick one.
So, she did. And the girl who hated needles learned to inject herself every night, and has done so for nearly 10 years now.
And she can still walk.
And although she hasn’t had a full blown exacerbation in a long time, she mostly manages day to day with only fatigue and transient tingling or weakness when the weather gets hot.
And her neurologist just gave her a disability rating of “0”
And she is my wife.
We are the lucky ones. We live in a time where there are some effective treatments available to slow the progression of disability and we can afford them. Even better, there are more effective drugs in development because of money raised for research and patient services.
I tell you this true story because this week is National Multiple Sclerosis Awareness Week, and I am going to raise some of that money.
My only athletic fundraiser is to raise money for Multiple Sclerosis research, which is making huge strides against the disease. This year I am riding the MS150 from Houston to Austin for the fourth time. But along with blowing past the overnight stop like I did last year, we're taking the fundraising up a level. I am raising my funds through the Janus Charity Challenge and all the way through Ironman Coeur d’Alene in June.
There are a number of ways that you can join the ride--by literally riding with me, by donating to the cause, and other ways as well. The most obvious way is to hit my fundraising link here or at the top of my sidebar. I want to raise $10,000 this year. If I do this, I will have raised $28,500 for Texans with Multiple Sclerosis, and while I have put in the initial seed money myself, I need the help of the bloggy peeps. However big or small your seed might be, plant it here and help me reach my goal.
Read about Multiple Sclerosis and all the progress being made, and help if you can. I’ll be continuing to share information about this disease and the MS150 through the event, and again through Ironman. Come along for the ride.