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This is part four of my four part series about my MS diagnosis. At the end of part #3 I went home to rest after my spinal tap.
You need to remember that I wasn’t married and I didn’t have a steady girlfriend when I was going through all this! I was living by myself and didn’t have any support system that I could talk to about this stuff! After the spinal tap and fours hours in the hospital I had to stay laying down for the rest of the day. My mind was wandering a lot expecting the worst and making plans for my life if the results turned out to be MS. I’m not a weak person but I think it’s natural for your mind to think the worst. At least mine did!
Other than my parents I didn’t have anyone close to me to talk about all the things that were happening to my body. My head was thinking of all the bad stuff that could happen. Looking back I remember every new tingling sensation or feeling that I had brought on more questions. This eventually led me down a path of anxiety and panic attacks. I suffered with those most of the 90’s and still suffer from then now! The only difference now is that I know what my problem is and how to handle it!
After all my tests were completed I remember asking the neurologist if this could be ALS because that is a 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 some more and then to call him on Friday which was three days away. I was on pins and needles to get the results. I didn’t get much sleep or work done those three days!
When Friday finally came I was half expecting my neurologist to say that I had MS. I had passed the spinal tap test which is 99.9% indicative of MS. According to the spinal tap I didn’t have MS. I felt fine 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!
If I had progressive MS (which is the worst kind) I’d probably 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. 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. Then I thought, how will I make a living? I can’t clean carpets with this disease! I didn’t really like the idea of going back home at 33 years of age and living there, either.
More thoughts were creeping into my head. I wanted to get married someday and maybe have children but who would marry a guy with MS in a wheelchair? I’d finally gotten to Minneapolis and didn’t want to go back to Rochester, MN. All these thoughts and more were running through my head! It’s little wonder that I developed panic and anxiety attacks. I didn’t really have anyone to talk MS with. I was slowly creeping into denial shell and I didn’t like it. I also didn’t even have my diagnosis yet!
I had started on this whole journey in January of 1989 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 was set to call 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.
As I said before this 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 again if I had MS. Again, he said no! I repeated what he was saying so my sort of girlfriend would hear it. The neurologist was was very busy that day and had to go. I didn’t have time to ask any other questions.
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!
I felt like I was on a wild roller coaster ride. My hopes had been raised high with the first diagnosis on the Friday before and now I felt lower than a snake’s belly. I don’t know if the neurologist was looking at someone else’s charts on the previous Friday or if he didn’t know what the hell he was doing! I took this news calmly but I should have hit the fan and blew up at him! 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 dietitian? 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 over two years 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.
On July 16th, 1991 my MS journey began. I started out Relapsing Remitting and 27 years later I’m now Secondary Progressive. I’ve married twice and have a son who’s almost 18. I worked the first 10 years but since 2002 I’ve been retired.