Monday, November 10, 2008

So it begins...

My journey with multiple sclerosis (MS) began in August of 2001. I received a phone call that my mom was in the hospital because she had lost vision in one eye. I was unemployed at the time, so I spent a great deal of time with her at the hospital. I did not want my dad to have a hectic schedule, as he is diabetic and must eat and take medication on a very regular basis.

After a couple of days in the hospital on IV steroids and multiple tests, my mom received a diagnosis of multiple sclerosis. She was completely devastated. Although she was a nurse, the only people she had known with MS were either in wheelchairs or nursing homes, dependent on others for care. Needless to say, Dad and I were also shocked, yet relieved that now we had an answer. It wasn't a stroke, which is what my first thought was. Mom regained the sight in her eye and went back to work a few days later.

I went back to my busy life with my husband and two dogs. I was still searching for a job, preparing for the holidays, etc. I checked in with my parents frequently and finding Mom to be OK, just left it at that. In February of 2002, I started working at a university for a petroleum engineering research consortium. I was so glad to join the work force again!

Later that year, I noticed that my right arm felt like it was asleep all of the time. I had those "pins and needles" feelings from just above the elbow all the way to my fingertips. I thought perhaps I had been doing too much data entry and was suffering from carpal tunnel. I went to my primary care doctor and he recommended wearing wrist splints while I slept. Still the numbness and tingling persisted. I went to the neurologist, who did a test that measured my electrical conductivity. This was not pleasant, as it involved pricking needles repeatedly into my arm. The test results were normal. An MRI was ordered, which also showed no abnormalities. I was put on a month-long regimen of Neurontin. After that month of medication, my arm returned to normal and I never thought of it again.

In the meantime, my mother's mood had altered considerably. She was very irritable, had entered into feuds with family and friends and then slipped into a horrible clinical depression. She had been fired from her job and could not explain why. My dad did not know what to do or where to turn. After a long conversation with my husband, we decided that I would take charge of her care. I made an appointment for her with my primary care physician and her neurologist. I went to all of the appointments with her. We helped her file for Social Security Disability. I found a psychiatrist. After reading a great deal about MS and its effect on cognition and depression, I knew Mom had to see a psychiatrist in order to find medication that would not interact with her other meds. Mom was approved for SSDI the first time and slowly returned to herself, after approximately a year on medication.

Although Mom didn't have the outward appearance of MS, she displayed many of the invisible symptoms that the general public are not aware. After her diagnosis, Mom started on Copaxone, a disease-modifying drug, and has not had a relapse since.

So began my journey with the MonSter. I will post more about my experiences with MS in this blog. Come back for more info about me and my family.

Next, Fast Forward to May 2008




I'm so glad that you contacted me and look forward to following your story. But I'm already thinking that I see the 'writing on the wall' - when were you diagnosed with MS? Or have you been?

There are a few other ms bloggers whose mothers also have ms. In my case, my mother has lupus instead.

BTW, I see you are in Tulsa. I'm originally from Midwest City and now living outside Washington DC.

Again, welcome to the ms blogger club.

Webster said...

Welcome Kelley,
I write at ,I've had ms a good while now - 27 years. You'll find that while all of our stories are different, we all share similarities.

I'm looking forward to more from you - and not just your MS. You can start with your Cairn Terriers lol.

Kelley said...

I was diagnosed May 28, 2008. I have been on Copaxone since June, which is the same drug that my mother takes. She has not had a relapse in seven years. I just got results from an MRI, and the neuro's office said that it showed significant improvement.

Where did you go to college? I went to OU and remember a trumpet player in band (I played flute) with the name of Lisa. Of course, I can't remember the exact last name, but I remember it started with an E. Were you in a sorority? This particular Lisa was an Alpha Phi, like me. Are you one in the same, or am I conjecturing too much?

I enjoyed your snippet in the most recent edition of "Momentum". My husband and I are really staring to actively plan for the future, especially since his dad is 89 and widowed within the last year.

Anyway, thanks for your support and the plug on your blog!




I was an OU Pride member and played horn. What a small world. I was at OU in 1986-1990.

It's possible that you might be thinking of Laura Emrich who played trumpet and had reddish hair. She might have been in a sorority, I don't know.

We were often confused and thought to be sisters. It took us awhile to discover we're 2nd cousins. Her father was the younger half-brother of my grandfather. Was odd to discover an unknown relative right there in the OU band.

So, I may not be the trumpet-playing sorority girl, but I was a horn-playing music education major.

That's wonderful that your mother has had no further relapses. The shots really are not a big deal. And good for you for planning ahead!!


Anonymous said...

Hi Kelley,

Welcome to our MS Blogging community. I've had MS for 32 years now and try to blog weekly. As you visit each blogger, check out their MS blog links at the side of their page so you can build up your MS blog reading list.

If you subscribe to them using Google, it makes the visiting much easier so that you only visit the blogs that have updated since the last time you visited. Otherwise you will be reading 24/7.

Again, welcome and take care,
Disabled Not Dead