It’s been a little while since I have talked about the current state of the union of myself. A lot has happened in the past few months. My husband and I bought a house, my family moved and bought a new house, and my family and I are opening our third sandwich restaurant. It goes without saying that with all of this happening in my life, I am very very stressed, overwhelmed and over worked. And, on top of all of that going on or maybe because all of that is going on, my ms has decided to act up.
Specifically, for a few weeks now, my left hand and fingers have gone from being numb and tingly to totally feeling like I have lost all muscle and strength in my left hand and fingers. I literally couldn’t lock or unlock the front door with my left hand for a little while. Typically, when I have numbness or tingling like this, it only lasts for 30 seconds to a few minutes at a time. However, this has been nonstop for weeks. I reached out to my neurologist after this went on for a few days, and he was concerned given how long this has lasted. He was so concerned, he got me in to see him the next day after our talk. He examined me like usual, and he thought it would be a good idea to have another mri done to see if the reason this constant numbness, tingling and loss of strength is happening is because I (God forbid) have new lesions or ms disease activity.
So, anyways, I saw my neurologist in mid-August, and since then, my strength in my hand and fingers has gotten better, but I do still have numbness and tingling in my fingers. To top it off, for whatever reason, UCLA is so booked out for mris, I wasn’t able to get an appointment on the books until the end September. While I waited for the mri, I used kt tape to lessen the inflammation in my hand. That helped some, but I still am not 100%., and since seeing my doctor, I now also have some stiffness in my left hand, which is very frustrating.
You know, it’s actually weird for me to be talking about how I am feeling. I have gotten really used to operating everyday—whether that be reviewing and redrafting contracts at work, running and managing my home, or socializing with friends and family—not at 100%. I always have to push myself to do every day normal things, because I am constantly fatigued among other things. But I get by and manage, and I think, in most cases, no one notices that I am not at 100%. One day I hope that I will go back to 100%, but until then, I am thankful that things aren’t worse.
And I was really hoping that I just overworked myself with the move, but my mri results came back in record time stating that I have new disease activity. Specifically, I have 6 new lesions. My neurologist called me Friday morning to let me know the results and that we need to come up with a new treatment plan this week. You know, it’s never good when the doctor calls you—especially at the crack of dawn. Receiving this news is my worst nightmare since being diagnosed. And I am truly heartbroken. For over the four and a half years of being on the same ms medication, Tecfidera, I have been so so lucky and have had no new lesions or ms disease activity. Any of the symptoms or things I have are from the lesions and scars I have prior to my original ms diagnosis. So, this is the first time since being diagnosed that I have had to deal with new disease activity, and to top it all off, I now need to get my ducks in a row and figure out a new treatment plan.
I am truly trying to cope with the news, but I am sharing all of this with you because I think there is one moral of the story. If you feel like something is wrong or something is going on with your body or health, reach out to your doctor and get checked examine. It is better to be safe than sorry, and it is better to catch anything that is, God forbid, going on sooner rather than later.
Here’s to being well preserved.
Always,
Taylor
