On Thursday March 5, 2009 Janice returned home from the gym and was complaining of numbness to her left arm and left leg. She was uncomfortable and wanted to know what to do. We went to a doctor and described her symptoms. He suggested she follow up with a neurologist. Yeah right! My daughter is the picture of perfect health! She works out daily, participates in triathlons and marathons and eats all the right things!
Saturday March 7, 2009 Janice returned home from the gym, this time complaining of numbness to her left side, and a gripping feeling. Ryan called his physician friend, who is an ER MD at St. Rose Hospital. He suggested Ryan bring Janice in and he would give her the workup. They did just that. Three hours and one MRI later Janice was on her way home with a diagnosis of Multiple Sclerosis and a referral to see a neurologist Monday morning.
Janice’s brain MRI report stated that “there are approximately fifteen T2 FLAIR hyperintense foci throughout the supratentorial white matter. That led to sleepless nights and GOOGLE MS! Well according to several resources, MS may not cause much trouble for years if ever, and people can continue on with normal lives.
Monday March 9, 2009 our first visit to the neurologist. Due to her discomfort level, and to expedite further testing, Janice was admitted to the hospital where she received 5 days of steroid treatment and further tests. It is now official. Janice is diagnosed with Relapsing Remitting Multiple Sclerosis (RRMS). After this treatment she was feeling pretty normal again and had started taking a drug for MS called Copaxone. This was to be short lived.
By the end of the month, Janice was having a relapse. Her symptoms included more numbness, fatigue, forgetful, repeating herself, drawn out speech, and with each day adding a new symptom, left foot dragging, and eventually fell into the bathtub, with no intention of even taking a bath. During this relapse Janice had uncontrolled giggles so we laughed ourselves silly, leaving us with fond memories and embarrassing moments. We laughed 'till we cried. Then I cried some more. Because of her difficulty with balance during this episode, one of our memories is all the crooked pictures hanging on the walls of our house.
April 7, 2009, Back to the hospital! This time the treatment is steroids to be followed by plasmapheresis. The brain MRI states “there are too many to count bilateral white matter lesions.” She also had a spine MRI which was normal (thank goodness for a normal one, ‘cause this mama is loosing it). In a 30 day span, her MRI’s went from 15 lesions to “too many to count”!
After this hospital stay, Janice is feeling pretty good again, and in June starts taking a different MS drug called Rebif.
July brings on another event. Janice has the numbness to her left side which we now know as the MS hug. (Isn’t that lovely) fatigue, vertigo, and now numbness to her head. Brain MRI shows more lesions. Is it possible? Spine MRI, normal (whew!). This time we did a treatment of oral steroids, but the results are not good enough so we go back to the hospital for plasmapharesis.
In September, 2009 Janice starts on another MS drug called Tysabri. This is given IV once a month. It works! Hallelujah! Since this first dose, Janice has not had a relapse. BUT, this little miracle drug has a wicked and nasty side effect called “PML” (Progressive Multifocal Leukoencephalopathy). PML is a virus that attacks the brain, is often fatal, and has no cure. To be honest the virus is fairly rare, but the outcome so bad that it is a serious consideration for those taking Tysabri. We know early on that we can only allow Janice a limited time taking this drug. So the question remains, how do we continue to fight this disease for the long haul?