Just had another appointment with the neurologist and it went really well. Things moved quicker then they have in the past and we were only at Johns Hopkins for two and a half hours this time. I brought things to keep my hands busy while waiting and it seemed like every time I pulled it out it was just a couple of minutes before I was packing it up again. Not having to wait very long definitely made it easier to be there. The different people that talked to me were all really clear. The guy at the front desk that checked me in and updated my insurance info for the new year. The nurse that called me back to take vitals was super sweet. Then someone came to see if I wanted to do some tests, some response time stuff and walking speed. I wasn’t feeling it that day. Those tests are part of a study and the last time they didn’t explain what they were bringing me back for beforehand and it was all very confusing, but my no was heard the first time and they didn’t try to pressure me into anything at this appointment.
There was a younger doctor that brought me back; she updated my information, took me through a series of physical tests, and then came back with the neurologist I have been seeing. I am really starting to like my neurologist. He goes goes off on tangents that are really exciting to him and shares random bits of information. He is also one of those people that is just not what you expect. Just by looking at the man you would not expect him to speak with an Irish accent and it is absolutely delightful.
During the appointment we talked about treatment. I am finally not going to be traveling heavily for several weeks in a row so now is a better time to start. I’m not going to lie, I’ve been scared and anxious about starting a new treatment. My cousin told me about a new MS medication that just got approved and is supposed to have less GI side-effects so I asked the doctor about it. The doctor said he was still more comfortable with Tecfidera and talked to me about why he still thinks it is the best one to go with right now. This new drug, Vumerity, is chemically similar to Tecfidera but with some differences in the chemical structure. Vumerity was created by a startup company and then bought by Biogen, the pharmaceutical company that owns Tecfidera. Vumerity did not go through Phase 3 clinical trials so not as many people have taken it which means there is just less data and research available on the drug. I can agree with the doc on this one; I feel more comfortable going with something that has more data and research to back it up too. However, it is good to know there are other less intense treatment options if this one doesn’t work out.
The doctor’s concern is to get my treatment started ASAP because all he can do as a doctor is keep me from getting worse. He can’t make me better but he can help prevent MS from disabling me further. Now there are still things I can do on my own to help make sure that I don’t deteriorate quickly. Top of the list, and probably the most difficult, is to quit smoking. Otherwise it is pretty simple: eat better, sleep better, and exercise.
Some of the symptoms that were very present when I went to the hospital and the few weeks after are starting to return so I couldn’t keep the idea of treatment on a back burner anymore. That tingly lack of sensation feeling has gotten slightly more intense over the past few weeks in a few different areas. I feel it in my pinky, ring, and middle fingers as well as a section on my palm. My feet and up into my calves. My thighs and lower trunk. Socks don’t feel right on my feet but it is winter and I need to wear socks. If fabric isn’t the right kind of texture it feels itchy. My hands kind of feel weaker but I haven’t noticed a loss of grip strength or dexterity, they might get tired a bit sooner now but they still work just fine. The biggest thing I notice right now is that I am feeling a bit unsteady and not as sure with my footing, another reason for wanting to be barefoot as much as possible.
With some of these symptoms kicking back up it is easier to feel ready to start treatment. I’m still feeling nervous and scared. I’m nervous that the side-effects are going to make me feel shitty and that the medication is going to be too intense for my body. I’m scared that if I don’t start a treatment I will lose some use of my hands and legs, or my sight, or that the weird sensation stuff will become painful. The doctor wants me to get another MRI, so I don’t have to wait too long to know if more lesions popped up. Even if there are no new lesions I know one of the ways to keep it that way is to take this medication. There is still all the healthier choices to make about food, exercise, and sleeping but I am starting to accept that I will need to take medicine too if I want to be as healthy as I can be.