Now that the diagnosis of multiple sclerosis was made, it was time to talk about what to do about it.
There are two ways of using medications to treat MS. The first would be taking something, steroids is an example, that would address the symptoms that you were suffering. Since I had hardly any symptoms, this wasn’t something that I needed to consider. At least not yet. The second group are what are called disease modifying drugs, also known as DMDs.
The idea of DMDs is to slow down the progression of the disease. Unfortunately none of them halt it completely. They also don’t work the same on all people. There are the lucky few who might find a drug that slows it down so much that it does effectively halt it. Other’s may find that no drug slows it’s progression down at all. Obviously, I hope that I will be in the former group, but only time will tell.
My doctor explained that there are about a dozen drugs currently approved with a variety of results and side effects associated with them. For someone in my circumstances she had three that she used as baseline treatments. I had done a little research before and knew that some of the newer drugs were taken as pills. I told her to give her best recommendation for me and I would go with it, hoping that it would be a pill.
My doctor recommended Rebif. I will go into more detail in another post, but basically it involves giving yourself a subcutaneous injection three times a week. She said that it has a very long safety profile and that with any luck, it may be the only medication that I will need.
But give myself a shot? Having someone else do it is bad enough. I just couldn’t imagine having to stick a needle into myself.
In actuality it isn’t really that bad (more to come on this). And for the first time at least I felt like I was doing something for my disease. It was the most empowered that I had felt in a long time.
At a later appointment I asked doc why she went with Rebif instead of Tecfidera, which is a new popular pill? She replied that treating MS is a marathon. At some point we may have to switch medications. When that time comes, it is much easier to switch a patient from an injection to a pill than the other way around. I couldn’t disagree with that.
The mysterious tingling leg, part2…
While I was waiting the six weeks for my nerve induction test (EMG), I developed a sore neck. It was like a stiff neck that you might get from sleeping in a bad position except that it didn’t get any better after a few days of a heating pad like it should have. The likely culprit was my baby daughter and the way that I was holding her to feed her a bottle. In the end, this little culprit turned out to be a savior.
My doctor prescribed physical therapy for me. I have mixed feelings about the PT. Learning a few exercises primarily for my traps was not a bad thing. However, it wasn’t much more than going to a personal trainer for a few exercises and getting a massage. The massage of my neck felt good, but I question the long term benefit of the treatment. After a few weeks of repeating the same exercises that I could easily do at home, I did just that and stopped going.
Then one day while I was holding my daughter and feeding her a bottle I noticed something very peculiar. When I turned my head down and to the left to look at her, I felt the tingle in my thigh. Every time that I moved in that direction the same thing occurred. I mentioned it to my wife who mentioned it to our doctor. “Have him come back in to see me immediately”.
I thought that I had solved the mystery. It must be that I have a pinched nerve in my neck. That might explain both the perpetual stiff neck and the tingling leg. My doctor disagreed. He explained how it was unlikely because the nerve fibers going down to the leg would be buried well inside of the spinal cord at the neck. A sensation in my arm or a pinched nerve in my lower back might make my idea more plausible, but not a neck-thigh combo.
I had no other symptoms at all and was basically very healthy. My doctor suggested sticking with the PT and watching it closely to see if it gets any better or worse. Then, as I was walking out of his office, he called me back. “Let’s not wait. Let’s get an MRI done and see what’s going on in there”.
Good call Doc.
It was almost exactly two years ago from today. I remember it distinctly because I was out of town at a conference for my work. I was walking down the sidewalk with several colleagues and noticed that my walking felt a little strange. It felt almost like I had been drinking, but I hadn’t. I didn’t think much of it at the time and chalked it up to reduced agility as a result of being out of shape. I recall thinking to myself how I really needed to make an effort to start working out again.
Two years later, this is now the normal feel of my walking and I know that it is a result of my MS. Of course, I still need to make an effort to get into the gym more.