Week 104 aka 2 years Post Lemtrada
October 15, 2021
Happy anniversary to me! Two years ago today I started my first (and only so far) Lemtrada infusion. In the last two years, a pandemic happened, spasticity in my legs and numbness in my finger tips came back and stayed, my thyroid took a vacation, I had a bladder study done and started pelvic physical therapy, we got vaccinated for covid, my lymphocytes are in the low end of normal and seem to be happy there, the spasticity in my legs went away after a year and a half, my numb finger tips have stayed and it looks like my thyroid has returned from it's vacation.
I started reading a book called "The Angel and the Assassin: The Tiny Brain Cell That Changed the Course of Medicine" by Donna Jackson Nakazawa, my functional medicine doctor has been recommending that I read it for a year. I've owned it for close to a year but finally got around to it starting it. I haven't gotten very far into it but as you can see it's about the brain and about the effects autoimmune diseases has on it. The author is a medical journalist and has an autoimmune disease I've never heard of. In the prologue, she starts to talk about the memory issues she has and it rang true for me and made me think about that and all the other symptoms I have or other things I have going on but don't want to admit I have them.
I don’t want to admit
I shake sometimes
Sometimes it's very visible when I lift a glass or silverware to my mouth. It's not all the time and it appears for not apparent reason.
my fingertips are numb
I have a hard time with some fine motor skills, like puttting and earring in or clasping a necklace.
My left knee sometimes feels weak
If we go on a long walk.
I have gotten more and more forgetful and my recall is definitely worse.
I often can’t think of the word I want to say and forget people’s name until after they walk by/away which is embarrassing.
I feel like I am floating through my life.
It’s difficult to concentrate sometimes, I often go into a room and forget why I went in or I’ll be working on something, go into another room, see something that I need to do, do that, go back into the other room and realize I forgot I didn’t finish the first thing.
I know forgetfulness happens as you get older but not like this in your mid-forties. I don’t get to the things I actually want to do like working on my yoga class home study or reading a book; the “to-do” list never ends because I am so inefficient. My days and months fly by and I have no idea how or what exactly I fill my days with. Those two cognitive issues really affect me emotionally and mentally; I feel like a flake. I try to brush/joke it off by saying my brain isn’t working today. I try very hard to make it look like it doesn’t bother me and nothing is wrong. I am not a “wear my heart on my sleeve”; I am very much a “power through it and don’t bother other people” type of person. Midwestern up bringing or whatever. I never want to admit I need help. I also don't want to admit it to myself. All those things I listed is progression; I don't want to blame everything on MS and I don't want to admit I've progressed more than I am willing to admit.
Eating
“cleaner” without gluten, dairy or anything else that causes me inflammation
makes me feel better but it is so difficult for me to stick to. That frustrates me even more because right in front of me is something that I can do for myself. Our culture revolves around food. Everything is more difficult when you have a "special diet" and I just don't have the energy or willpower.
Speaking of energy, I stopped taking Vyvanse again. It's such a pain in the ass to get. According to Texas law, my doctor can't just call a Walgreens in Michigan and have them fill it for me, he can only have it filled at a Texas pharmacy and they can't mail it plus they have to renew my prescription every 30 days. Every 30 days I have to contact them and ask them to renew it. It's just a pain. I had been feeling fine energy-wise until this week. This week I am just worn out from all the running we've been doing. I've been on 3 trips since the last weekend in August and I am going on another one next week. I feel really weird traveling this much but only two of those trips were previously planned; the other two were kind of last minute. I've taken a different airline on each trip and definitely felt the most uncomfortable on the Southwest flight. Those planes are so packed and although they require you to wear a mask, they don't enforce it very closely. I am not going to fly Southwest for a while.
I got my annual MRI last week. There was a new lesion noted but my Neurologist thinks it’s an artifact, not a real lesion. I only did my brain without contrast; it was great only being in the machine for 15 minutes. My blood results last month looked good. My TSH is still back into the normal range; that’s such a relief. I also had my T3 & T4 checked but I haven’t gotten the results on that yet. I expect them to be in the normal range; I am not having any symptoms. My neurologist sent me the results of the MRI but my appointment with him isn’t until next month. He said we would discuss the results more at my appointment.
I went today to get this months lab work done. I'll post my newest lab results.
This post has gone on for awhile. Be well.
