The Scariest Day of My Life – Part 3

This is the final article of my three part series on my diagnosis of multiple sclerosis. If you missed the first two articles I suggest going back to read them otherwise part three won’t make sense to you.

After all my tests were completed I remember asking the neurologist if this could be ALS because that is a probable death sentence but he said he didn’t think so. Then I asked if this could be a brain tumor and again he said he didn’t think so. He wanted to look at my tests one more time and then to call him the next Friday which was three days away. I was on pins and needles to get the results and if I remember correctly I didn’t get much sleep or work done those three days!

When Friday of that week came I kind of half expected my neurologist to say that I had MS. But in my mind I had passed the spinal tap test which is 99.9% accurate. That indicated that I didn’t have MS. I was running my small carpet cleaning business during the day, cleaning some carpets at night so how could I have MS? I felt perfectly OK except for the blurry vision when I jogged and the tingling sensations in my right arm and leg. I still felt strong and healthy so how could I have a major disease? I sure as heck didn’t feel like I had a major disease! I wasn’t ready for a wheelchair yet, either! I was walking OK and I was still dancing. But my mind was still thinking of everything bad that could and might happen!

I knew that if I had progressive MS (which is the bad kind) I’d be in a wheelchair within a years time! I didn’t want that at the age of 33. I’d always wanted my own business and I finally had it and it was doing good! I’d just learned how to country western dance. I was meeting a lot of new people and I had a great time dancing a couple of night’s per week. I also didn’t want to be drooling down my chin like I’d heard some people with MS can get! Then I thought, how will I make a living? I can’t clean carpets with this disease! I’d spent 22 years trying to get out of my hometown. I didn’t really like the idea of going back home at 33 years of age and at this stage of my life. I was in Minneapolis were I wanted to be and I had a successful carpet cleaning business. I wanted to get married someday and maybe have children but who would marry a guy with MS in a wheelchair. I thought what if I had to move back home with my parents? I love my parents but they have a relationship that involves screaming and yelling at each other everyday. I couldn’t move back home to that crap again! I joke with people now that I never had a Christmas, Easter or Thanksgiving day dinner without a plate of yelling! lol So all these thoughts and more were running through my head! Every 5 minutes brought another question about multiple sclerosis to my brain. It’s little wonder that I developed panic and anxiety attacks. I had no one to talk to. I had my parents but I was slowly creeping into my denial shell and I didn’t want to bother them. I also didn’t even have my diagnosis yet!

I had started on this whole journey in January of 1990 when I first noticed the blurry vision when I jogged. Now I was down to the phone call that I’d been waiting for. It was now the middle of July in 1991. I called my neurologist at 2pm on that Friday. The woman that I’d been dating once in a while just happened to come by my office for a visit that day. She knew I’d been going to the doctors for tests so she was aware of everything. She was there when I made the call. I’m not prejudiced but my neurologist was Mexican or Spanish and had a very thick accent. At times he was hard to understand. I asked him immediately if I had MS and he said, “no, you do not have MS” with his thick Mexican accent! I was very happy and excited to hear those words as you might expect. Just to be sure I’d heard him correctly I asked him two more times if I had MS. Both times he repeated no and I repeated what he was saying over the phone so my former girlfriend could hear. When I said no MS her eyes lit up with happiness and I was very happy and excited myself! The neurologist had to go, he was very busy that day so I didn’t get to ask any other questions. I went home that night feeling good. However, I was still wondering what the tingling in my body and the blurry vision when I jogged was all about.

The tingling and numbness continued that whole weekend and into Monday so when Tuesday rolled around I called the neurologist back. I said to him, “if I don’t have multiple sclerosis then what are these funny sensations that I have going on in my body”? He then said six words that ruined my day and would send me on my MS journey! In his thick accent he said, “no, you do have multiple sclerosis”! He doubled checked his charts and yes I had the disease! I was mad and furious! Not so much that I had the disease but the way this doctor had handled everything. First, I didn’t have the disease and four days later I did! My hopes had been raised high with his first diagnosis on the Friday before and now I felt like a truck had hit me head on. I don’t know if he was looking at someone else’s charts on the previous Friday or if he didn’t know what the heck he was doing! I took this conversation calmly like I did most things back then but in the 16 years since I have learned to be more outspoken and I don’t take any lip or grief from anyone. I should have hit the fan and blew up at him but I’d been taught differently. You were supposed to respect doctors because they were so smart. Ya right, I have since learned differently! If something like that happened today to me or a loved one I would blast their incompetence!

I’m not the type of person to sue anyone and the thought never crossed my mind at the time. However, if that happened today I might seriously think twice about it! This is a well known hospital and clinic in the Minneapolis area. This doctor had ruined my day, week, month and year! I asked him what I should do now and he calmly said, “try to live your life as normally as you can”! He said I should eat a balanced diet and get plenty of rest. I was in shock and feeling things I didn’t know I had in me! I was dumbfounded! Could he have suggested a counseling clinic for MS patients? Could he have suggested seeing a dietician? Could he have suggested places to contact other people who had been newly diagnosed? He could have but he didn’t! I’d been on an emotional roller coaster for a long time and it had just done a quick stop like in driver’s education classes. It felt like a head on collision! I don’t remember exactly but I probably went out and had a few beers that night.

In a weird sort of way I was happy because now I had a name for all of my symptoms but I was still in shock. I’d never been sick a day in my life except for my asthma and now I had a major disease! It was called multiple sclerosis. I also didn’t know anything about it, how I was going to end up or how I got it! To the outside world I took the bravado approach to the diagnosis and acted like it didn’t bother me. However, my little brain was whirring and a week later I had my first panic attack. Anxiety and panic attacks will be discussed in future articles.