Weeks 45-51 - Post Lemtrada
October 11, 2020
My one year anniversary of my Lemtrada start date is in 4 days; I started counting on the last day of treatment so this is the end of week 51.
The Good News: 🎉
- My MRI came back with 'no disease progression' i.e. no new lesions. That is especially great news because it was in comparison to a Nov 2018 MRI so I had gone 11 months prior to starting Lemtrada.
- I haven't caught COVID (knocking on lots of wood).
The Not-So-Great News: 😔
- My thyroid might be shot.
- Three of my relapsing symptoms have been pretty permanent since the Lemtrada.
Of course being human, my brain concentrates on the not-so-great things. Do you think that's a survival adaptation? To metaphorically be looking over your shoulder because you definitely notice the positive people, seems to be less of them out there. Anyway, my lab work was a little late this month because I had yet another UTI. 😢 That's the fourth one in 12 months. The results showed my TSH is still almost 0. I do finally have an appointment with an Endocrinologist. The US healthcare system at it's finest. It took me over 6 weeks to be allowed to make the appointment and now I am waiting another 7 weeks for the actual appointment. This is how that looks when you have a HMO (currently, my only option): my Neurologist sees my low numbers and refers me to an Endocrinologist but my PCP (Primary Care Physician) is the only one who can send a request to my insurance company. So the Neurologist office contacts my PCP's office; they do not respond so I contact the office; they get the request through and I wait for the insurance company to whatever they do; they finally approve it then I have to wait for the official approval to get sent over to the Endocrinologist and for some reason I have to wait for them to call me; now I have an appointment the first week of December. I am not dead, clearly, I haven't lost all my hair and I am not fatigued to the point that I can't function so it must not be that bad. I already take some thyroid medicine so I am not completely without thyroid hormone. I would hope if it was an emergency, they would get me in sooner. For now I am just trying not to worry too much. I had an online yoga training intensive the last two weeks that took my mind off of pretty much everything. That was a nice break.
Looking back at my last post and my notes-to-self; I had 't realized that I didn't post at all in September. Other things that have been going on; I had a telehealth appointment with my new Neurologist at the end of August. He scheduled me for the MRI since I hadn't had one; we are going to put off my Lemtrada until there is a vaccine for COVID. He said that because my MS isn't really active; he would rather put it off because if I did take the 2nd dose of Lemtrada now, I wouldn't be able to get the COVID vaccine until my immune system built back up enough. We talked about my leg spasticity and CBD oil. He said he has patients that it works for and some that it doesn't. He's never prescribed it to anyone because of the strictness in Texas' medical marijuana laws. He also recommended stretching in the morning and before bed. I haven't been consistent with the stretching. I am still using the CBD lotion but it's still the same; seems to help a bit but not completely. He said I was good to get a flu shot and my 2nd pneumonia shot; I am taking care of that next week. I asked him about the T&B cell subset; he said they wouldn't give me anything that would reduce my immune system right now so basically there is no point in tracking it. I decided it was better not to know since they wouldn't do anything about it anyway and it would be one more thing for me to obsesses over. My Lymphocyctes went down a little compared to the end of August which itself isn't a big deal but I did have that UTI so it's a little disconcerting that my body didn't seem to mount any kind of attack. I've been trying to tell myself that it doesn't necessarily mean anything but I think I am just going to ask my doctor. He can tell me I am over thinking.
I think I hit all the big things. We are back in the heat of Texas; still in the 90s in October. I've got my bird feeder back out and bought a peanut wreath. I am watching a squirrel hang upside down to get a peanut. They are buried all over my backyard. I've turned into a 70-year old lady feeding the birds and squirrels. 👵 All the other things finger tips, energy level, etc are the same. I had my annual physical and another appointment with my functional medicine doctor. My physical went fine and I am still working with the functional medicine doctor to even things out. Still throwing darts at a wall. 😕
I've got my latest blood work posted.
Stay well.
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