Part 2 - My MS Journey
Taking My Spinal Fluid to the Lab

My first visit to the neurologist went pretty well all things considered. He had reviewed the MRI and said he was 99.9% sure that I had Multiple Sclerosis. He said other than the lesions; I had a pretty normal brain for a girl. He had a quirky manner, but it was welcomed at the time as it helped to lighten up the situation a bit.

He looked at my eyes and performed some of the same tests that the ophthalmologist had completed previously. Then he had me walk across the room normally and then again on my heels. He tested the strength in my arms and legs and my reflexes. He pointed out my hand tremor and asked me how long I’d had it. I told him it has been so long I couldn’t remember. He said that was probably due to MS.

Later that week, I had a lumber puncture/spinal tap. My neurologist did the test in his office which was unusual to me. I assumed it would be done in the hospital. My daughter accompanied me to this procedure and was able to be by my side and hold my hands. Having had epidurals with both of my pregnancies, it was pretty easy; much easier than having one in the middle of childbirth contractions! The most bizarre part of the whole process was when they handed me my spinal fluid for me to give to the lab. I was supposed to deliver it to along with orders for more blood work. As I reclined in the passenger seat of my daughter’s car with my spinal fluid in my lap, I felt like I was in the twilight zone. I said to her “Am I really delivering my own spinal fluid to the lab?”

Unfortunately, despite lying flat as I was told, I had a bad headache for a week. When I stood up, I felt like my head was going to explode! I was almost to the point of needing a blood patch procedure but was able to forego that as the headache finally resolved. For me, the headache was the worse part of that test, although I’ve heard some are fortunate enough to avoid the headache.

The next week, I had a test called an Evoked Potential test. I still had the double vision so I was feeling off and anxious, but the test itself was not bad. My arms and legs were hooked up to electrodes and I received little shocks. I felt jolts that were almost painful but very short lived. Then he hooked electrodes on my head and put images up on a TV screen. The worse part of this test was anxiety over the unknown. The gentleman that did the test was very warm and assuring, and made the procedure as comfortable as possible.

I was still on leave from work from my hysterectomy, which was nice since all of this other had been thrown into the mix. I would have the results in two weeks, so I concentrated on trying to be as normal as I could for my two middle schoolers. I drove them to school, closing one eye so I could see, and tried to be present as much as I could. I slept a lot during the day because I felt so unwell. I spent a lot of time alone but made good use of that time. I encouraged myself daily and tried hard to concentrate only on things that were good. It was important for my children, and our family, that we move forward with hope as we waited for answers and clear direction.

“Finally, brethren, whatsoever things are true, whatsoever things are honest, whatsoever things are just, whatsoever things are pure, whatsoever things are lovely, whatsoever things are of good report; if there be any virtue, and if there be any praise, think on these things.” Philippians 4:8


Click here for Part 3 of Karen's Journey

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