This is the abridged bloggy version of my journey with multiple sclerosis. If I have left anything out that you would like answered, please feel free to ask questions in the comments section and I will be glad to answer them.
In 2003 I began noticing some weird sensations in my body. My left foot felt “asleep” most of the time. It was annoying but I ignored it. I started seeing spots in my field of vision. Then the left side of my face went numb- like got a shot from the dentist numb- and stayed that way for six weeks. That did freak me (and my hubby) out a bit so I went to the doctor who referred me to a neurologist. The neurologist did some nerve testing in my face and extremities (not the funnest tests to go through but not unbearable). He then ordered an MRI of my brain.
The results of the nerve testing were abnormal in that my nerves reacted slower to stimuli than you would expect for someone my age (at that time I was 24). However, my MRI was normal. The neurologist told me then that a demyelinating illness could be present despite the normal MRI and encouraged me to follow up with him in 6 months to a year. Well, life happened and I didn’t go back.
Fast forward to 2007 when I started forgetting things and having difficulty concentrating. I chalked it up to stress (I had some of that going on in my life at the time). Soon though I was no longer able to juggle all the things this multi-tasking mama always had. I was forgetting kid’s appointments, work projects, volunteer commitments and more. For those that knew me pre-MS, it was frightening and bizarre. I am your typical Type-A overachiever. People were always asking me how I kept track of everything and accomplished all that I did and then all of a sudden- I couldn’t.
My doctor thought I was depressed and prescribed an anti-depressant. Then, I started dropping things. Holding a cup of coffee in my hand and it would just fall out of my hand. Writing a check and then pen would fall from my grasp. I was beginning to get irritated with myself!
I was so tired that I was falling asleep any time I sat still. I fell asleep at my desk at work multiple times, any time I got in a car and I was going to bed earlier and earlier every night. Then in October 2007, I was driving home from my job as a case manager for mentally retarded adults (Matt was in the car with me) and I fell asleep while driving. This was not the first time this had happened to me in the last few months but I was caught because Matt’s first words after waking me up and me jerking us back onto the road were “I’m telling Dad”.
Needless to say, I went to the doctor. They suspected a sleep disorder. I had every sleep test known to man (some of which border on torture!). Nothing. So the doctor said let’s do an MRI to make sure nothing else is going on. And, that is when they found the white matter changes in my brain. Plaques caused by multiple sclerosis. I was sent to an MS specialist for a second opinion who confirmed the diagnosis after more tests (including a lumbar puncture (spinal tap- yuck!).
I went through a period of denial. MAJOR MELISSA STYLE DENIAL. When God got my attention after that, I started the treatment that my MS specialist recommended and have been learning to live with chronic illness ever since. I am on a drug called Copaxone that is administered by injection (by my dear hubby) every day. I also have to take a stimulant (an ADHD medication) to be able to stay awake during the day and adequately parent my children. I have fallen several times this year and sustained injuries ranging from a broken tailbone to damaging a joint in my back. I am currently in physical therapy three times a week due to the last fall.
I had optic neuritis (inflammatio of the optic nerve) last March. This caused me to lose most of the vision in my left eye for a while. I was on IV steroid treatment and regained about 80% of the vision in that eye.
I fatigue very easily. I have to take a 2-4 hour nap every day in order to attend my kids sporting events in the evenings, eat dinner with my family, things like that. I use a cane on the days that my balance is off or my vertigo is acting up. I use a wheelchair when we shop or will have to walk for long periods of time so that I don’t get overly fatigued. Heat is my enemy. If I get too hot, I experience what I coined “spaghetti leg weakness” where my body feels like a wet noodle that I have no control over.
The reason you don’t see many posts about MS is not because I am embarassed to have it nor that I like to pretend that I don’t. It is that I feel fortunate to have the life that I have. I am blessed. When I read stories of others going through truly horrific ordeals, my problems seem so small. However, I am passionate about MS research. The scientists are close to developing an oral MS treatment (and my injection sites thank them) and I firmly believe there will be a cure for this disease in my lifetime.
Thanks for joining me during this week as I raise awareness of what it is to live with multiple sclerosis. Tomorrow, I will talk more about what you can do to help further the cause!