My Day at the MS Clinic

Friday started off as any other day. I was nervous about our hour and a half drive to see my new neurologist who just so happens to be a Multiple Sclerosis (MS) specialist. My previous neurologist didn't have a clue about MS and enjoyed spending my fifteen-minute appointment time chatting about his vacations and treating me like a child. I'm not a child. I am an educated woman with an incurable disease.

My husband, sons and I headed for the Ohio State University Medical Center's Multiple Sclerosis clinic. That's right, it was a family event. We were on the road fairly early and my sons weren't too excited about the long drive. They were pretty ecstatic to have a day free of homeschool torture though (oh how torturous it must be to sleep until eight and do schoolwork at a leisurely pace. The horror!).  Of course, it wouldn't be interstate traffic without the morning commuters. Once we hit Columbus every single crazy person with a license was right next to us on the road. It made the trip to see my new neurologist so enjoyable!


We made it to the OSU Wexner Medical Center and checked in to the clinic. The nurse there had impeccable taste, because she immediately noticed my elephant necklace I was wearing. She commented on how pretty it was and then informed me elephants were her favorite. Mine too! I like her already. As I was checking in, they asked me if I had been exposed to anyone with Ebola in the past seventy-two hours or if I had traveled overseas recently. Nope. Sure haven't. They handed me the typical "tell us about you" forms and told me they'd be with me in a moment. Here goes nothing.

A few minutes later a nurse called my name and escorted me back for a few tests. They administered a walking test, fine motor skills test, and an eye test. As I was sitting there waiting to start the fine motor skills test, a woman with a walker slowly made her way to the restroom. She couldn't have been but a few years older than me. She looked like every step she took was the hardest thing she's ever had to do. I immediately crawled into my mind and began wondering if that was going to happen to me? Was I going to be subjected to this MonSter's wrath?

The nurse started my testing and the entire time I was putting the little white pegs into the holes I was thinking about that woman. I was being timed, so I should have been focusing solely on the task at hand. I couldn't though. I'm a thinker and when my mind says it's time to listen I lose focus and my thoughts win. Here I was, trying to prove that MS wasn't beating me physically as I mentally focused on how I may lose this battle.

 A few minutes later the woman slowly exited the restroom and I helped hold the door for her. I smiled at her and she smiled back. I know she was looking at me wishing she was in my shoes as I was looking at her thinking of how I was glad I wasn't in hers. Damn this MonSter!

They led me back to a room with my guys in tow and told us the doctor would be in shortly to meet with me. I was nervous. I secretly wanted him to walk into the room and tell me that my previous doctor was completely wrong and that I didn't have MS. I kept cycling through how amazing it would be. I would cry tears of joy and then exclaim "I knew it!" as I danced around the tiny, sterile little room. Wouldn't that be a memorable moment?!

A few moments later, my new MS neurologist entered the room with two med students in tow. He asked if I minded if they stood in on my appointment. No problem! I don't mind people learning. It's not like I have some sort of secret disease. He sat down and introduced himself (I'll call him Dr. I). I introduced myself and my guys and then Dr. I got down to business. He asked me why I was at the MS clinic and about my symptoms. Medications I've been on and why I wasn't taking them anymore. He then pulled up the MRI's of my brain that I had sent a few weeks before my appointment. There it was, on that tiny little monitor. My brain. Of course, I had to warn the med students to be prepared, they were about to see one beautiful brain. They weren't amused. Hey, I tried!

Dr. I had obviously reviewed my brain ahead of time. He knew exactly which images he wanted to discuss with me. He pulled up the image of my brain with the most damage and pointed to the areas that he was concerned about. The areas that he found significant. I asked him what was so significant about those damaged areas and he replied that they are pretty good indicators for MS. He then showed me the side view of my brain and how deep that damage was. The "black holes" as some people call them. The areas of my brain that can never be fixed. The parts that MS has taken from me. A few deep areas lie in the periventricular white matter region which is where MS likes to hangout. You can see them in the image to the left.

I lost hope the moment I heard him verify that my previous doctor's diagnosis was correct. I definitely have MS. Dr. I continued on explaining that with my lumbar puncture results and the brain imaging findings it's pretty obvious I have this disease. I also have a few lesions in my spinal cord. Time and space are important indicators for MS. Since I have lesions in my spinal cord and brain, space is a factor for me. Since April of 2013 I had secretly thought my original neurologist was wrong. He wasn't.

Dr. I turned the screen away and then started asking more questions. He got to the depression question.

"Are you depressed?" he asked.

"Yes." I began crying and couldn't explain why. He asked if I wanted to talk about it. I didn't. My husband moved to my side and handed me a tissue. He put his arm around me and in that moment I knew I was going to be taken care of no matter what happens. I may have a MonSter hiding inside me, but my husband isn't afraid of MonSters. He will be right there by my side.

Dr. I continued on with his questions and he tried to comfort me. He understood why I reacted the way I did even though I don't know why I started crying at that moment. It came out of nowhere. I am pretty good at hiding my feelings behind sarcasm and humor. This time, I had no defenses and I cried. I looked at my sons and I could see my youngest, my sweet, loving little man who would move mountains to take care of me was worried. I composed myself and continued on with the doctor's questions.

When Dr. I was done with the interview. He did a few reflex tests. He found the same thing I had been told before. My right side reflexes were lacking. He asked me to close my eyes as he took a broken cotton swab and poked different areas of my arms, legs, and feet asking if I could feel them. I couldn't feel some of them as well as I could others. I was inside my head again and that meant feeling anything was difficult.

After he did a few other tests. I asked him what form of MS I have. He said he wasn't sure at this point, because my MRI's are over a year old. He want's new MRI's to compare things to.  Fair enough. Then, he started his evaluation. He thinks I have an interesting way of dealing with things. I basically hide behind wit and he wants me to start seeing a psychiatrist. He wants me to start physical therapy to see if my pain can be minimized through therapy. He prescribed vitamin D, a muscle relaxer, spasticity meds, and a med for my kidney issues. Then he asked me to pick a new MS disease modifier. He said no more shots, because he doesn't want to put me through what I dealt with before when I was on Betaseron. Good to hear.

He made a very good point about the disease modifiers. He explained that things are mild now, but what happens when that mildness has had time to build upon itself? If I am not on the modifiers it could unload a monsoon form of MS and devastate my life. With the modifiers, I may have a chance to slow that storm down and live a happier life. I may have a better chance at slowing this MonSter down and to me, anything that may wage war against MS is on my side. So, I'm going to start Tecfidera.

Dr. I spent a little over an hour with us. Answering every single question I had and displaying true professionalism. I have never been to a doctor that I felt so much respect for and felt so confident in their abilities. He made sure I had all of my questions answered and told me to contact him if I ever had anything to ask.

I'll admit, I was a little hesitant to visit the OSU MS clinic. I haven't had the greatest luck with doctors and I figured this would be the same experience. I was completely wrong. Some of the best MS doctor's on Earth are now caring for me. I think I'm pretty lucky to be able to have this resource. Not only will it benefit me, but it will help my family as well.

If you or someone you care about is dealing with multiple sclerosis, I highly suggest you find an MS clinic in your area or at least one you can travel to. Since my diagnosis I felt so unsure of everything and for once, I have that peace of mind that I will be okay. Part of that is due to my new doctor and how well he knows this disease. Most neurologists only learn bits and pieces of MS. Now that I've visited someone who has dedicated their life to caring for individuals like me I have a much better outlook.

If MS is a part of your life and you need someone to chat with or vent to, please feel free to contact me. I understand how life altering this diagnosis can be. There are times when you just want someone who can relate with what you are going through to talk to. I can relate. Email me at womaninthemancave@yahoo.com

For now, I'm going to focus on what I need to do and try to keep my mind off of what "might happen". It's difficult, but if I'm going to beat this MonSter I have to.

As always, thanks for reading.

Take care,
NB