Mike Has MS
My Multiple Sclerosis Story
I was moving some data around my old external hard drive, and I came across something that’s worth sharing.
At one point in January of 2003, I started documenting what I had gone through in terms of my MS diagnosis. I never finished writing the story, but what amazes me is the detail that I went into. The story is unedited except for the names of the doctors I’ve seen in the past few years. I need to finish this story because I think it’s important. The funny thing is that I didn’t even remember this had existed until I found it on my hard drive.
This time…
The day before I was to leave on the vacation of a lifetime, I sat in the exam room of a doctor’s office I’d never seen before. These were complete strangers. How little I knew that within a few months, I’d know them so well.
I’m starting to document this journey on January 4, 2003. I have no idea where this will lead, but I have a feeling this will be a long road.
Early Warning Signs
In early October of 2002, I was getting out of the shower. As I toweled off, I noticed the back of my right calf was a little numb. I wasn’t too concerned. In the coming weeks, it was to become a battle I’d have to fight.
As the days passed, the numbness gradually became more pronounced. I usually noticed that one spot. After a few weeks, though, it got worse. The numbness had spread to my feet and my right hand. It was time to get some help. I had no idea that in the coming three months, I’d be diagnosed with Multiple Sclerosis.
The New Doctor
I was at a crossroads, the first of several I’d face in the coming months. I had been seeing Dr. B—- since I moved to Pittsburgh in 1996 except for the 16 months I lived in Philadelphia. I went to see Dr. B—- in 2001 for some back problems, and she chided me for gaining twenty pounds 1999. She sent me away with Ibuprofin and instructions to lose weight. I was disenchanted with her with her practice and her staff. It was rushed, assembly line medicine.My friend Phil and his partner Randy had just started seeing a new doctor that they both really liked. Dr. Roger A—- at the A—- Medical Group (AMG) has a great practice that isn’t just gay friendly. Dr. A—- and most of his staff are gay. This is something that I’ve found to be a great benefit. There are some things that can be uncomfortable to discuss with other people, even if it is your doctor. That’s not the case with Dr. A—- and his staff. I’m completely comfortable with them, and that’s critical to me.
So I sat there in an exam room in Doctor A—-’s office on October 15 for the first time. I was leaving for my Australian vacation on October 17. Needless to say, I was nervous. Dan, Doctor A—-’s nurse and right hand, was taking my vitals. He noted that my blood pressure was markedly high. I’ve never had high blood pressure. He told me just to relax, that I was among friends. He also handed me some bad news. My height was only 5’7”. I’ve always thought I was 5’9”. I hope that means I’m not shrinking. The good news is that I haven’t shrunk any more since then.
After Dan left, Doctor A—- came into see me. We talked about what’s going on with the numbness. We also talked about my lifestyle in general. He spent a long time just asking questions about me, my life, and my lifestyle.
Because I was leaving for vacation in a few days, he wanted me to take an anti-inflamatory medication to see if that might relieve some pressure on a nerve. He thought it might be a pinched nerve. He also wanted to see me again as soon as I came back from Australia. He also gave me the name and number of a physician friend of his in Sydney in case I ran into any trouble.
I took Celebrex for the two weeks of my vacation. Unfortunately, it didn’t help the numbness. So a few days before I came home, I called his office to schedule another appointment.
I went back into see Doctor A—- the first week of November. He was as perplexed as me. He wanted me to have an EMG and a full battery of body chemistry tests. He was starting to think this could be diabetes.
Tests, Round OneI went to Quest Diagnostics for the battery of blood and urine tests. That was supposed to be easy. I dropped by their Squirrel Hill office after my orthodontist appointment. This shouldn’t have been a problem. However, the tech asked me if I’d eaten that day. It was noon, so obviously I had. Unfortunately, I missed the little note on the form that noted that I needed to fast before the tests. So I had to go the following Friday before work.
The EMG was a different story. The hard part was finding out where to have this done. I had no idea what it was, other than a nerve conductivity test. Using Highmark Blue Cross/Blue Shield’s knowledgebase, I learned that I was having Electromyography and nerve conduction tests. It sounded simple enough.
I learned that UPMC performs EMGs at both Southside and Montefiore hospitals. It was going to be mid-December before they could do it at Southside, so I tried Montefiore. My timing was good, and they were able to see me within a week.
The EMG was one of the most painful tests I’ve ever experienced. They zap you on one end of the nerve and read it at the other end. Some of these are just done with electrodes, and that’s fine. But the ones where they zap you with an intramuscular needle are complete hell. I never want to do that again.
Back to the Primary DoctorAfter about two weeks, I called Doctor A—-’s office to see if he’d gone over the test results. Unfortunately, when I called, I got the bitchy secretary. She told me that Dan had gone over the results, but she couldn’t discuss them over the phone. I asked if I needed to schedule an appointment to go over them, then. Because she was the bitchy secretary, I had to wait three weeks for an appointment. There was no “squeeze time” available.
So I waited the three weeks. I wasn’t happy. When I got in to the office on November 27, I did mention to Dan that I had to wait, and he was as angry as me. I now know that if I’m having issues with getting an appointment, I’m to call and talk directly to Dan. That’s why I like these people.
The blood tests showed everything was pretty good. My iron was a little low, as was my cholesterol. It was only 113. Doctor A—- congratulated me on that little accomplishment.
The EMG showed everything was normal. There was no damage detected in nerve conductivity.
While the normal tests results were good, they were also a curse. It was the day before Thanksgiving, and we still had no idea what the problem was. The numbness continued, but we had no idea what was going on. Doctor A—-’s next move earned respect from me—he admitted that he was over his head. He wanted me to see a neurologist.
Linda from Doctor A—-’s office sent me to Associates in Neurology near Shadyside Hospital. This isn’t the normal practice that AMG referrs to its patients. However, they were unable to see me for several weeks. Everything happens for a reason. I ended up seeing a neurologist that I really like.
Memory Lane, Part One
Shortly before I went to see the neurologist for the first time, I was telling my friend Drew that some of these symptoms seemed a lot similar to something I had when I was younger. Drew was emphatic that I needed to explain that to the neurologist. He was right, and that led me to my source of information about my several stays at Children’s Hospital—my mom.
When I was about ten, during the fifth grade, I was feeling a tingly numb all over. That night, we were watching a play and I couldn’t see. My vision was really blurry. The next day, I still couldn’t see. My mom was really scared when she noticed my eyes were fluttering. When I closed my eyes, she could see that they were still fluttering. She took me to Dr. Ashbaugh, our pediatrician, right away.
Dr. Ashbaugh told my parents that this was something he hadn’t seen before, but he knew it was serious. He told my parents to get me to Children’s Hospital in Pittsburgh right away. I was seen by a pediatric neurologist named Ira Bergman. Over the next two years, Dr. Bergman would be someone I saw very regularly.
I spent about a week in the hospital, where they did countless tests. I had CAT scans at least once a day. I also had an NMR, which is now known as an MRI. I had countless blood tests and x-rays. I even had a spinal tap.
I was a medical mystery. I saw scores of doctors during those months. Nobody knew what was going on. When they finally did the MRI, things started to make sense. If I’m not mistaken, at the time, there were only three hospitals in the country that could perform that type of scan, and Presbyterian University Hospital was one of them. The MRI showed them the detail they needed to see to understand what was going on.
At the time, I knew there was something wrong with the nerve endings at the base of my brain, but I didn’t understand much more than that. I knew that they treated it with steroids, specifically Prednesone.
In talking to my mom, she said that they found I had a demeylination of the nerves at the base of my brain. Further research showed me that this is essentially what Multiple Sclerosis is. But at the time, they believed that children didn’t get MS. I may have been one of the earliest cases of MS. We just don’t know.
After taking the prednesone for several months, we thought everything was back to normal. About a year from the first occurrence, it came back. We jumped through the same hoops again. We did the same medications again. It went away again.
My mom says that Dr. Bergman told her that this could come back again in a few months, a few years, or it may never come back again. I don’t think any of us expected it to recur in twenty years.
The Road Already TraveledWhat we didn’t know at the time was that my Aunt Velma (one of my dad’s older sisters) was diagnosed with MS about the same time that I was being the medical mystery. For some reason, they were didn’t want to tell my parents this.
Having a family member who has MS has made this a little less shocking. I know that it has robbed Aunt Velma of a lot of strength, but I also know that she’s fought it every step of the way. I’ve seen what happens when one refuses to give up, and I plan on following her example.
Doctor S—-, Part One
I went into see Dr. S—- within a week. I liked this guy. He’s a straight shooter, and you know where he’s going. In our initial appointment, he was concerned with my reflexes. I have very strong reflexes, abnormally strong. He was a little less concerned when I explained that Darcie, my little sister who is an RN, also has the same reflexes.His first goal was to get more information. He wanted me to have an MRI, which was done the following day. I also had to bring him the Quest results and the report from the EMG.
Tests, Round Two
Story of the MRI/braces.
Calls
After the MRI, Doctor S—- called me within three days. He was a little concerned because he saw some inflammation at the base of my brain. He wanted me to have a hearing and vision pathway test done. He said that after those, he’d want to see me again. He connected me with a secretary who scheduled me for the following week.
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