My untold MS story (part 2). The confusion of chaos…

About a week after the tests, my primary care physician called me into his office. In a calm and clear voice, the doctor told me “You have Multiple Sclerosis.” My next question to him was simple: “OK doc, what’s next?” I could not have expected what was to come. The next two years were hectic and chaotic. My MS life has always been a constant learning experience. I have continually had to remember: “Adapt and overcome.” I have also needed to get used to the fact that: “The only constant in life is change.”

Right away the doctor put me on an intermuscular injectable MS medication. For the record, I genuinely dislike needles. Sadly, at that time all MS medications were injectable. I began doing a lot of research on MS. It seemed that everyone had a cure for this autoimmune disease. Let me let you in on a well-known “secret”: there is no cure for Multiple Sclerosis. However, I found many scammers out there. Surprise, surprise, right? Usually, they want you to buy their product. Here is a funny story: There was an owner of a skydiving company who told me that skydiving helps MS. Yeah, sure! I did the research just to check. However, other than him at that moment, no one had ever made that claim.

The internet and I had a close relationship for a long time after that. I learned everything that I could about MS. In my quest for this multiple sclerosis knowledge, I quickly learned a lot. I learned about the shysters and charlatans that are out there. I learned about the correct and incorrect information and the differences.

I was now unemployed. Unemployment required me to live off of my savings. Once I moved out of my mom’s house after high school, I never again asked anyone for money. So at this point, I had to learn “creative money management.” My mortgage was always paid on time as that was where I lived. I knew that if they cut my electric or gas, I still had a place to sleep. My utilities would be paid late sometimes, but never was I threatened with a shut-off notice. Primarily I lived like the downtrodden. I wore clothing that was old and made me look like the homeless. However, I had a few nice-ish articles of clothing that I could wear to my doctor appointments. I kept my house at an uncomfortable temperature no matter the season. I am an Eagle Scout and a US Marine, so I am not afraid of camping in bad weather. I had 40 watt light bulbs in a few places around the house. Most of the time, I just walked around my house in near darkness. I did everything that I could to keep from spending money needlessly.

I ate very little food. At this point, my weight had fallen below 100 pounds. The doctors would always ask me if I was eating. I never lied and would always say “three meals a day.” No doctor ever asked me how much food was in each meal. For breakfast, I would have two ounces of cereal with powdered milk poured on top. I may have a can of corn with some Italian dressing for lunch. Then for my evening meal, I’d possibly have 8 ounces of mac-n-cheese. If I got hungry after dinner, I would have a couple of multigrain saltines. I soon learned that the stomach only growls for a day or two. Food is a survival thing, not really about taste, though that may change someday. I always weigh my food even to this day.

I found that my diagnosing doctor had terrible “bedside manners.” It was Thanksgiving week. During my appointment, the doctor’s cell phone rang. He then picked the phone up, and he held up one finger telling me to hold on. At this point, he stepped out of the room for five minutes. When he returned, he explained that he had to set up some holiday dinner plans. After that appointment I left his practice, never to return. I “doctor-hopped” for a while trying to find a good doctor. I have met plenty of people with MS. The one thing that many of them say is that they were unhappy with their doctors. I am bewildered because I could not understand them. I did not comprehend why they did not leave the doctors that they did not like. I suppose I am just pickier than most. However, if I am going to pay a doctor, he or she must have excellent bedside manners. Besides, there is a relationship between you and your doctor. It is a discussion between the two of you. Give me options, and the pros and cons of each. At this point let me decide. It is your medical degree, but it is my body.

After I left my diagnosing doctor, my search continued to find a new neurologist. Finding a doctor is like finding a friend. There are a lot of great people out there, but not all of them are “friend worthy.” Of course, it is essential to make sure that they take your insurance. It is also good if they are close enough to your house. Accessibility is often an overlooked requirement. I saw one doctor who had one step and a makeshift ramp that was too small. You needed to have someone go to the lobby to get this ramp for you. When you place this ramp on the ground, you had about twelve inches to turn. If you did not make this sharp turn, you would go off of the step. Apparently, safety was never a consideration.

This two year period was full of doctor appointments, MRI’s and weird MS symptoms. It took me a while to find a doctor that I was happy using. This two-year time frame was also extremely chaotic. Between finding an acceptable doctor and learning how my MS would affect me. Things just did not make sense. It was like trying to get directions from a person who does not speak English. Sure you will get there, but you will make some wrong turns along the way. Of course, all of this caused me stress. By the way, stresses and MS are mortal enemies. These new stresses cause more MS symptoms which cause more stress. It was and is a vicious cycle.

I was “learning” my new MS body. I had these strange symptoms, and I did not know how to deal with them. I was extremely temperature sensitive. I had weird symptoms like extremely itchy hands. That one sounds silly, but it was much worse than you are thinking. Those silly itchy hands sent me to the ER. My walking had become extremely unstable. However, I was too stubborn to get a walking aid. I was always able to simply push myself when I “hit a wall” pre-MS. MS was new to me and now “pushing myself” had devastating outcomes.

I avoided everything because I did not want to be a burden to anyone. Things were starting to go downhill. My attitude was getting worse. I was very grumpy, and I had a very short temper. A depression had begun to settle in. I rarely saw my dad. My sister, who I saw even less often, said that she did not like the person that I had become. She avoided me like the plague. I saw my mom twice a month when she had me over for dinner. However, like a gremlin that someone spilled water on, the worst was yet to come.

5 thoughts on “My untold MS story (part 2). The confusion of chaos…

  1. Another great addition. And I don’t blame you for leaving that doctor– were his holiday plans more important than the time you took to come in and be seen? I don’t think so.


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