My (Almost 2 Year) Journey with MS
While I initially thought the numbness on the entire left side of my face was a symptom of recent disc problems in my neck, I contacted my Physiotherapist. Two weeks later when the entire left side of my body went numb, I again contacted my physiotherapist, from work. He suggested I go to my doctor that day, and if unable to see my doctor, to then go directly to the hospital.
When I called my GP, she told me to go directly to the hospital, where they did some simple tests, set up an appointment for a neurologist consult a few weeks later, and off I went, back to work. Once I finally had my MRI, I was back in the neurologist’s office. When he told me I had MS, I actually thought it was a death sentence.
Once I realized it wasn’t, I felt relieved and lucky that it wasn’t an inoperable brain tumor!
I was referred to a Neurologist working at a new MS Clinic that was set up closer to my home. Had about a three week stint with optic neuritis resulting in double vision, but continued to go to work every day and did my job by closing one eye and getting it done.
Then I started my medication, Copaxone. Everything seemed to be going great. Sure I was tired all the time, but no biggie. I could deal with that. I could even still work my 10 – 11 hour days, and at peak times of the year still was able to work evenings and weekends at home all without overtime pay - or compensation, what a trooper.
What got to me was that after these stints of overdoing it, it would take me a couple of weekends at home to recharge. This meant not leaving the house and just sleeping. Sleep 12 hours, get up, eat, have a nap. Living the dream! Never mind that housework and family time was suffering. I had my priorities straight, right?
When I had a follow up MRI, it showed 8 enhancing lesions – what? I was doing fine, no more vision problems, still tired, but nothing out of the ordinary. I was devastated, but took it like a trooper. My meds were changed to Rebif and have had very few minor side effects.
A very good friend stopped me in my tracks when she said “you haven’t accepted the fact that you are sick, have you?” The thought of that moment still brings tears to my eyes. She stated it perfectly. I really hadn’t – MS, the wonderful "invisible disease”.
When my doctor told me I needed to cut back my work hours to 8/day, with no overtime permitted, I was
devastated. You mean I would no longer be able to do the same lower level, underpaid job at my ‘top 100’ company? How will they survive? Quick – sell your shares!
So, even though this company has great benefits, “self-insured” for short term disability, and long term disability through an outside provider that insures up until retirement, they found me a new job where no OT is required, and cut my pay accordingly. I realize that in the scheme of things, my health is more important and I still have a lesser paying job with good benefits.
Prior to accepting the new job offer, I wanted to find out the results of my most recent MRI. I called my neurologist to see if she could give me the results over the phone, prior to my next appointment. She agreed to have the MS Nurse give me the results and I could pick up the report to provide to work for the accommodation request.
The nurse told me I had no enhancing lesions. WHEW! The most recent visit with the neurologist ended in me firing her (although she doesn’t know it yet). She talked over me, talked down to me, and even misread my MRI report. She told me I had no enhancing lesions and one un-enhancing lesion since my last MRI. When I tried to correct her by saying I did have one new enhancing, she basically told me I was wrong.
When I read aloud the sentence that said, “In the interval between the most recent study a new enhancing lesion is noted within….”, she said I was right, and explained that she made a “verbal typo”??? It went on from there, me correcting her, and she ultimately agreeing with me. She even told me that it really didn’t matter how many active or new inactive lesions show up on the MRI, only the symptoms are important.
Hmmmm, I thought disease progression was important? But hey, I’m no neurologist and am relatively new to the whole MS, MRI, and lesion thing.
MS has taught me several lessons.
1. Health should always take first priority, family #2.
2. Trust your instincts.
3. Surround yourself with people who are not afraid to tell you what you need to hear, not what you want to hear.
4. Look out for yourself, other than your family and good friends, everyone else will look out for their best interests.
5. Insure you both like and believe in your doctor, and be sure they listen to what you are saying to them.
6. Take care of yourself and don’t let others bring you down.
7. Every time you find some humour in a difficult situation - you win! ;)