Mike Has MS
Monday, July 28, 2008
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.
Saturday, June 14, 2008
Seeing Kraig
PICT7617.JPG
Originally uploaded by mikehillwig
I few months ago, I met a gay couple at the MS Walk. Kraig and I hit it off pretty well. It’s not often you meet another gay guy your own age who has MS. Kraig was walking with the group from Beth Israel Deacones Medical Center (where I had my surgery) today, and they were right in front of us in the parade. It was so good to see him.
Sunday, May 18, 2008
MS Days
Today is one of those days that I can only describe as an “MS Day.”
Reggie woke me up at six, and we did the potty/kibble thing before going back to bed. Then I was up about 10:00 feeling tired. After a simple walk around the block for Reggie to poop, I’m feeling completely wiped out like I need to take a nap.
I worked hard in the yard this weekend, maybe a bit too hard. Perhaps now I’m paying for that.
Saturday, April 12, 2008
Thank You
For those of you who have sponsored me for the MS Walk, thank you. Between my friends, family, coworkers, and blog readers, I have raised about $3100 for this year’s walk, putting me more than $100 over my $3000 goal.
As of tonight, the night before the walk, I am the #10 individual fundraiser for the Boston walk, and that makes me feel pretty damn good.
If you’d still like to sponsor me, please do. You can do so here.
Tuesday, March 18, 2008
Pre-Op
Not being from Boston, I didn’t realize that Beth Israel used to be a pretty bad hospital. My first experience with them was when I started seeing a primary care doctor at Fenway Community Health. What I love about the BIDMC system is that all of my doctors have access to the same information. My surgeon was able to see the notes of my visit with the neurologist. The neurologist was able to see the results of my visit with the optometrist. This is all really cool stuff.
Until today.
Today was my pre-surgery interview with a nurse in the anesthesiology group (who never gave me her name, just “one of the nurses") and she had no clue of my medical history nor medications. One of the things that every doctor has done is gone over my list of medications to ensure that it’s absolutely current, including the vitamins I take. My neurologist (who I absolutely adore) tells me that it’s a big push for the hospital to ensure that every patient’s list of medications is current. So when “one of the nurses” is doing the pre-op interview, not only did she ask what medications I was taking and what special needs I had, she was totally missing out on a valuable resource that was probably right at her fingertips. Now I understand the need for her to ask what medication I’m on, but wouldn’t it have been easier for her to ask if I was still taking Strattera 25mg twice a day and 44mcg of Rebif three times a week instead of asking me to list all of the medications I currently take? She was surprised when I told her that I had multiple sclerosis. What? It’s been part of every discussion with every doctor at every visit. Even a cursory look at my medical records should have indicated that to her.
I’ve really had a great experience with BIDMC and I’m hoping this one situation doesn’t drag down my opinion of the entire system.
Tuesday, February 19, 2008
MS Walk 2008
If you haven’t sponsored me for the MS Walk yet, you can do so here.
Monday, January 14, 2008
2008 MS Walk
I’m registered to walk for the 2008 MS Walk. You can sponsor me by clicking here.
Friday, December 07, 2007
Deferred
I attempted to give blood this morning. Now that I’m no longer on my MS meds, we thought I might be able to give. Nope. I’m still permanently deferred by the MGH Blood Bank.
Thursday, October 18, 2007
Relapse
Have I mentioned lately that my boss is a really good guy? I went into him this morning and told him that I was having some health issues. My MS is acting up again. It’s the change in the seasons, I swear. His first question was “Do you need to work from home for a while?” I told him that I have a lot of work to do, and that the work will get done.
When I get like this, my sleep patterns get all messed up because I get tired and want to nap during the day. We agreed that I’m going to cut my hours physically in the office a little short for a while. I’ll still work, but I’ll probably come in a little later and leave a little earlier.
As far as the mechanics of what’s going on, it’s numbness, loss of balance, and being tired all the time. These are classic signs of a relapse, at least in my own case. Hopefully this won’t last too long. I have a life to live. The good news is that having Reggie forces me to stay active. We probably walk a good mile every day. That forces me to get at least a little bit of exercise.
Monday, September 24, 2007
Was it the MS?
It was about this time five years ago that I first started noticing the symptoms that would lead to my diagnosis of having MS.
My neurologist in Pittsburgh was good. My neurologist here in Boston is better. The neurologist in Pittsburgh assumed that I had relapsing-remitting MS. That’s perfectly reasonable. For four years, I thought that I was having ups and downs in my MS. My new neurologist told me that my profile was more like transitional-progressive MS. It means my symptoms won’t come and go. Instead my symptoms can be expected to be progressive instead of up and down.
It makes me wonder if all of the ups and downs I’ve faced over the past few years really were the MS or if it was something else. I can’t exclude that it could have been in my head.
Now I’m trying to do some research on TP MS. It’s really rare to find any references to it other than things that are cursory.