Weeks 41 - 44 Post Lemtrada
August 23, 2020
Twenty days of 100+ degree weather in Texas this month. Glad we are still up- north. The kids' school start date was delayed then they are starting online for a few weeks but we will continue online school until we think it's safe. We will be heading back to Texas soon though. The number of COVID-19 cases has come down from it's peak in July but all the indicators (new hospital admissions, Positive rate, etc) are still higher than they were in mid-May.
So what's been going on with me...my thyroid seems to be failing me. 😞 I had my blood work done last week and my TSH level came back at 0.02; basically 0. I had a follow-up appointment with my functional medicine Dr. a week and a half ago; I mentioned that my hair seemed to be falling out more again. She put in an order for me to have an extra blood draw for some hormone tests to be done at the same time. Obviously, I got my Lemtrada lab work back but I haven't gotten the extra test results yet. My Neurologist's office called me on Friday because of the TSH level. They sent in a referral to see an Endocrinologist. They also mentioned some additional blood work. I did tell them that I should be getting some more results in; they are going to see what those numbers are before they order more.
I also talked to my functional medicine Dr. about medical marijuana and CBD for my leg spasticity. Apparently, Texas does have a medical marijuana card system. I use system loosely because you can qualify for a card but you can only get low level THC products which according to my Dr. is legally available without a card for the most part. She did say that she really liked the idea of me using CBD and recommended I seek out a doctor who is more knowledgeable about it. I did buy some CBD lotion from a dispensary here. I hope it's better quality then the stuff you can buy at Family Video. 😉 I used it for about 5 nights in a row and I woke up one morning and didn't have any shakiness in my legs at all. I noticed right way because it's been an expectation that I need to pause for a moment until my legs are ready. It was only that one morning but I have noticed the shaking has been less. But the intensity has been up and down since it came-on in November. Basically, the jury is still out on whether it helps or not. She also mentioned a book to me that she has mentioned several times but I keep forgetting to look it up. It's called Angle and the Assassin by Donna Jackson Nakazawa. I bought it but haven't started reading it yet. It's about cell function.
My blood work results are posted. I did not get the Lymphocyte subset done this month but my absolute Lymphocytes are still headed in the right direction. I have a telehealth appointment with my new Neurologist this week and I plan to talk to him about continuing the subset. I also want to ask him about getting a flu shot this year. I am wondering if it's not advised since my Lymphocytes are still low. I have other questions that pop into my head that I need to write down because I keep forgetting them.
Other things: I had to fill out new Lemtrada One-to-One forms because my Neurologist changed. I thought it didn't matter because I was in the same clinic but apparently it does. I started listening to a webinar on MS & Covid19 by the Rocky Mountain MS Center. It was one of those things where you are sitting there 10 minutes early waiting for the webinar to start then something distracts you and now you are 15 minutes late. 🙄 In the first part they were talking about the statistics of MS patients surviving Covid and if they were on a medication, what medication; if they had other health issues, what health issues. I watched about 10 minutes of it then they switched topics. It's recorded; I am planning to go back and watch it. Here's the link if you are interested. The most interesting thing that I caught was that your Bcell level doesn't matter for survival. They said the data showed you could have 0 Bcells and still survive. I asked about information on Tcell levels but they didn't have any.
That's all folks.
Wish me luck with my thyroid. 🤞
Take care of yourselves.
