Mike Has MS
Tuesday, June 23, 2009
First Tysabri Infusion
169-365: Tysabri
Originally uploaded by mikehillwig
I started a new chapter in my life last week. No longer will I be injecting myself several times a week. Instead, I’ll be making a trip into the infusion unit at Beth Israel Deaconess Medical Center for an IV infusion of Tysabri.
When I made the appointment, they told me to call earlier in the day to do the “prescreen checklist.” This is something the nurses have to do to make sure that you’re healthy enough for Tysabri. It does compromise the immune system, so they need to be sure. By doing this in advance, the nurse has the opportunity to order the meds from the pharmacy, meaning they’ll be ready when I arrive.
When I got to the infusion, Chris, my nurse, led me to a hospital bed, told me to get comfortable, took my vitals, made sure everything was in order and started my IV. She went to get my meds and discovered a problem. It appears that they hadn’t arrived from the pharmacy yet. She told me this may take a little while. I really didn’t mind. I had a book that was keeping me company. She brought me a sandwich, a soda, and some cookies. Really. They fed me!
When Chris came back with my meds, she did apologize. It turns out that she hadn’t sent the order to the pharmacy earlier in the day. Again, it wasn’t a big deal to me. I was in no hurry, and I had a book. When you deal with doctors as much as I do, you learn to bring a book.
As she started the IV drip, it was completely uneventful. The infusion takes an hour. If you’ve ever had an IV infusion, this was just like any other. At one point, I fell asleep. I vaguely recall someone coming by and putting a blanket on me.
After the infusion was done, I had to stay in the unit for an hour for observation. I guess in the initial trials, a few people got light headed after their infusion. Again, I had a book and took a bit of a nap.
The whole situation was uneventful, and I do love the nurses at BIDMC’s infusion unit. They’re all incredibly friendly.
Saturday, I was a little tired, but nothing too bad. I love not having to give myself an injection anymore.
Sunday, April 26, 2009
Tysabri
I have a lot of things going on, yet at the same time, my life is pretty quiet.
Last Monday was the Boston Marathon, and we cheered on my friend Jamie. I’m so proud of him .
We’re in the middle of a project at work that’s keeping me pretty busy. I’ve put in a lot of hours the past week.
I’m still absolutely loving my new camera. I’ve taken almost 2200 pictures with it so far. This one may be my favorite so far.
I went to see my neurologist last week, and I’m not very happy with the meds I’m on right now because of the side effects. We’re going to start the paperwork to get me on Tysabri. It’s the once-monthly IV infusion, opposed to the thrice-weekly injection I have now. I’m happy to be losing the side effects. We have to do a bunch of tests to make sure it’s safe for me to take Tysabri. There have been some deaths related to the medication in the past, but I don’t appear to have any of the counter-indications.
I’m off to NYC next weekend. It’s my friend Jay’s birthday, and we’re celebrating. On top of that, I’m getting a tattoo (on my back) covered. We also have awesome seats to see Avenue Q. I’ve not seen it before, so I’m pretty excited. Reggie will be staying with my friend Ulli and her Yorkie, Mr. Duke. I know he’ll be in good hands.
Reggie and I have had a house guest for the past few days. My friend Chris left his Cocker Spaniel, Oliver, with us. He was such a loving boy. He and Reggie had some dominance issues, but nothing I couldn’t clean up. I didn’t like that rug, anyway.
Thursday, March 19, 2009
Advice for those Diagnosed with MS
A woman on my Pug owner’s community commented that her neurologist thinks she has MS. Naturally, she’s pretty upset about this. This is and edited version of what I wrote. My advice rarely varies.
I was diagnosed with MS about six years ago and I’m still standing. It’s not a death sentence.
Let me put this into a bit of perspective. I’ve lost several friends to AIDS. We’re all given challenges and hurdles to overcome in life. I didn’t pull the short straw this time.
My dad’s sister, my aunt Velma, has been fighting MS for close to 25 years. If she can do it, so can I. And so can you.
Here are a few tidbits of advice I give to people I talk to who are diagnosed with MS. If you are diagnosed with MS, keep these in mind.
1. Find a neurologist who specializes in MS. Your neurologist may know a lot about MS. A specialist will know even more.
2. Don’t stop living. Take advantage of every good day you have.
3. Learn to listen to your body. When it says it’s time to rest, it’s time to rest.
4. Don’t be afraid of meds that are injected. It’s mind over matter. It’s no worse than insulin.
5. Take care of your mental health, too. Find a support group in your area.
6. It’s okay to be angry, upset, and confused. See #5.
Friday, November 21, 2008
Light at the end of the tunnel
For the past three weeks, I’ve been dealing with an MS relapse. This has sucked. But I think it’s just about over. Most of my serious symptoms have passed, and I’m just now dealing with the side effects of being on heavy steroids. My emotions have balanced out, the acne is still raging, and I now have a new 20 pounds to lose. Actually, I only gained about five pounds, but it looks like I’m carrying it all in my face. That can be lost quickly.
Honestly, the worst part of this has been emotional. Now I know that being on steroids can mess with your emotions, but at one point I was convinced this was the end. I’ve always said that we caught my MS early and that my rate of progression has been slow. What I don’t tell most people is that I recognize my rate of progression can kick into high gear at any time. Obviously, my preference is that this not happen. But it could.
I still need to take it easy for a little while, but I think the worst part is over.
Friday, November 14, 2008
Numbness
Healthwise, the past week has been rough. After my appointment with the neurologist, she put me on the steroid therapy. That hasn’t been fun. But I thought I was managing.
It’s funny what stress can do to you when you have MS, especially when you’re in a relapse. I’ve had stress impact me, but not like this.
I mentioned that some of my former coworkers from Shawmut have lost their job. It hit me hard. It was like a member of my family being hurt. When I found out that someone who had been a mentor to me lost her job, the right side of my face went numb. Being a very passionate/emotional person, I deal with my emotions, but calming them isn’t easy for me. Instead, I have to work through them. I spent a bit of time on my chiropractor’s table this week, and that certainly helped a lot. But it was really rough.
Finally today, I was starting to feel better. I got up this morning with a bit of a sore throat. After the past week, having a physical ailment that wasn’t MS-related was very welcome. Knowing that I wasn’t at a hundred percent, I thought I’d put in a half day and get some stuff done. Somehow, I managed to get through the whole day and then leave about 3:30 to head into the city to attend the gathering for the former coworkers who had been let go.
I allowed myself to step off the wagon tonight to have a beer. Singular. One. It wasn’t difficult. With all of the meds I’m on right now, a lot of alcohol would be a very bad thing.
Realizing that I’m still dealing with an MS relapse, coming down with a cold, and the other stresses of my life, one would think that I’d know better than to push myself too far. Still, I was just socializing and catching up with old friends. When I left the bar, my legs felt like jello. That should have been my sign to go home and go to bed, right? Nope. I went to the grocery store and picked up the stuff I need for tomorrow’s cooking. Let me be the first to say it. That was dumb.
If I’ve learned anything, it’s that when my legs feel like jello, it’s really time to stop. After the jaunt to the grocery store, I came home and very quickly put stuff away. Reggie and I walked to the post office to get some NetFlix movies in the mail, and now I’m done. I’m going to let my body rest as long as it wants tomorrow. If that means sleeping until noon, Reggie permitting, that’s what we’re going to do. I’m wiped.
The past week has been rough and I need to get through this.
Friday, November 07, 2008
Better Living through Pharmaceuticals
My neurologist is absolutely amazing. Dr. Marion Stein at the MS Clinic of Beth Israel Deconess Medical Center never ceases to amaze me. She’s kind of old school, and I trust her completely. I’ve been dealing with some issues, and she gave me the option of some heavy steroid therapy.
I’m on my third day at the Infusion Unit at BIDMC. This is my third daily dose of 1 gram of Solumedrol as an IV drip over four hours each day. That will be followed by an 11 day taper of oral Prednisone. I do three days of 80 MG, three days of 60 MG, three days of 40 MG, and two days of 20 MG.
As you look at the article about the steroids, you’ll see there are some pretty intense side effects. My neurologist, being as good as she is, has me on some other stuff to deal with that. First, I’m on a light dose of lithium to help take off the edge and irritability. She also has me on Serax to help me sleep at night. That stuff is amazing.
I start the oral prednisone on Saturday, and Dr. Stein did warn me that I’ll probably crash on Sunday. She gave me out of work until Wednesday, but if I’m out past Monday, I have to use my short term disability, and that means I lose a week of pay. I plan on going back to work on Tuesday, meaning if I miss Wednesday, I use my sick time.
In other news, I have a date tomorrow night.
Tuesday, November 04, 2008
Infusion
I went to see my neurologist this morning. I can’t say it was the best visit we’ve ever had. Lately, I’ve been having some fatigue, which has gotten a little better, but I’m having some issues with my vision, and some serious issues with my balance.
Tomorrow, I’m going to be going into BIDMC in the morning for steroid infusion. It’s a three day outpatient thing, so I’ll be out of work at least until Monday. I’m not thrilled about this, but it’s the right thing to do.
The good news in this is that since the fatigue is getting better, she thinks I may be on the upswing of this attack.
Monday, October 27, 2008
The New Normal
Nobody ever said that having Multiple Sclerosis would be fun. I thought I knew what I was in for when we started chasing symptoms down six years ago. Oh, I had no idea.
Losing the feeling in my fingertips became the new normal. A few weeks ago, I was absolutely rejoicing when I had feeling in the fingertips of my left hand. That was short lived. And the chronic fatigue once wasn’t as bad as it is now. It seems I’m always tired, and I certainly turn into a pumpkin much earlier than I used to.
It wasn’t all that long ago that I’d be turning off the alarm clock and landing on my feet all in the same breath. Those days are long gone. I have to sit up on the end of my bed for a moment to get my equilibrium before standing up now. And then I can get up to take Reggie outside.
This is the new normal. It’s not fun. But it’s the hand I was dealt. I’m not complaining. This disease can be devastating, and I could have been dealt a MUCH worse hand. My rate of progression is relatively slow. Most of my symptoms are sensory. Very few of my symptoms are functional, aside from the random balance issues. I’m okay with this. I’m not in a wheelchair, and I’m not using a cane. Yeah, I’m perfectly okay with that.
The past few weeks, I’ve been under some stress and pressure. I have no doubt that it’s related to my current fatigue. But a good, relaxing weekend helps that. This week is our annual SOX audit at work. Getting through that will be another burden off my shoulders.
Today is one of those days where I feel like my energy supply is going to be depleted by noon. Under normal circumstances, I’d have taken the day off work. But with auditors here, it’s not that easy. I’m going to push myself to my practical limits and then it’s time to stop. History has taught me the costs of pushing myself too far. I can spend an afternoon in bed or I can spend the rest of the week in bed. I’ll take the former, thank you.
Tuesday, October 14, 2008
Neuropsych
I went for some neuropsych evaluation a few weeks ago and then went back for the followup a week later. My final report came in the mail on Saturday. There weren’t any surprises.
One of the things that really surprised me is that most of the things in the report have more to do with my ADD than my MS. It turns out I’m pretty smart. My visual-spacial skills are superior. There was one test that I particularly bombed. As we discussed it, she was telling me that the reason I bombed it was because instead of taking the test, I was trying to figure out how to beat the test. I have this tendency to figure out what the rules of the game are in order to win. It’s how I got through high school without being diagnosed with ADD, because I test well.
When I took a test that was much more difficult, I did better. That seems to indicate that when I really focused on something, it was rather effective. That means my Strattera is working.
The whole thing was really quite interesting, and we now have a good baseline going forward. I’ve asked her to make sure that both my psychiatrist and neurologist get a copy of the report.
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.