2 years + 7 months + 3 weeks - Post Lemtrada
June 3, 2022
Happy belated New Year, I guess. I could have sworn I wrote a post in January or February but I guess I only wrote it in my head. I also started writing a post in early April but even though there was a lot to say, I couldn't find the words.
Summary of the last 6 months:
- In February, I started having double vision in the morning.
- I had another MRI but it showed no new lessons.
- We spent months de-cluttering and getting our house ready to sell.
- Listed and sold our old place, closed and moved into our new place, finished moving out of the old place, closed on that and tried to fit our life into half the space we had.
- Double vision got worse but then got a little better after we moved.
- Had a follow-up appointment with my Endocrinologist, an appointment with my Neurology PA (for the eye thing), a regular Optometrist eye appointment (update my glasses), an initial appointment with a Neuro-ophthalmologist (for the eye thing), had blood work done and a CT Scan for that, had a second follow-up with my Endocrinologist, a follow-up with the Neuro-Ophthamologist, and a 6 month follow-up with my Neurologist.
- Visited my cousin in Atlanta at the beginning of April (that was a nice break).
- Went to a wedding in Missouri at the beginning of May (that was nice too).
- I finished my 4th and final yoga teacher training intensive via zoom and graduated from the program.
- My son graduated from high school.
- I am now in Michigan.
It's been an insanely chaotic 6 months.
My Endocrinologist lowered the Methimezol from 5 mg to 2.5mg per day in February and my thyroid hormones have been in a good place since then.
The double vision started at the beginning of February and was just happening first thing in the morning. I woke up one morning and looked at the alarm clock and saw two clocks, one over the other one. It took about 5-10 minutes for me to be able to see straight then I was fine the rest of the day. I made an appointment with my Neurology PA; through her screening checks we discovered that my double vision showed up when I looked to the far left and I had some eye soreness. Also when I closed my eyes, shook my head then opened them again it took a couple seconds for my vision to lineup again. She suspected that it had to do with my eye muscles because the double was on top of each other rather than next to each other. She had me go in for the MRI and put me on a steroid, she wanted to do an infusion but because of the president's day holiday weekend, they gave me an oral steroid. As I mentioned above, there were no new lesions. The steroid helped the soreness but the double vision in the morning was the same. It stayed pretty stable until April when the bulk of the stress hit. I noticed that it seemed to be lasting longer in the morning, I noticed it sometimes during the day and I was noticing it at night when my eyes would get tired. Once life calmed down a little, I went back to that base line I started with in February. The Neuro-opthalmogoist found that the muscles under my right eye were swollen. It showed up on the CT Scan and he didn't find any markers in my additional blood work that showed any other possible issues. I did ask about the worsening that seemed to be related to stress. He said it made perfect sense because my brain is working to straighten out my vision and when you are under high stress your brain gets distracted with dealing with the stress and doesn't have enough capacity, basically, to also deal with the vision stuff. He prescribed an 8 week course of weekly steroid infusions. It took me a few weeks to set it up with everything that was going on the last 3 weeks but I did my first dose this week; 500 mg of Solumedrol. The last time I was on that it was like taking speed but that was also 5 days in a row and I was on an oral steroid before that so we'll see how it goes. It's been two days, that evening and yesterday, I felt a little bit "peppy-er" but I am not feeling that great today.
During my Neurology appointment, we just reviewed everything that had been going on and talked about my next Lemtrada infusion. As much as I wanted to, I just couldn't squeeze it in in February. I am planning to do it in early October.
That's where I am health-wise and the rest of it...it's just been a lot. Everyone knows how stressful moving is in general. Downsizing is extra stressful because you feel like you've gotten rid of a lot of stuff then when you actually move, you realize how much more stuff you still have. Furniture-wise we did a good job paring down; it's just all the stuff. How do you accumulate so much stuff without even realizing it? It's emotional, uncomfortable, stressful, cramped...we'll get through it. Going through the process sucks. For the first time ever we have a storage unit (we actually have two, a medium and a small). 😳 We usually make fun of people who have so much stuff they need a storage unit and here we are. George Carlin has that bit on stuff...so true. Here it is if you want a laugh.
I am hoping to use the summer in Michigan to recharge my batteries because there is still a lot to do in Texas. We were only in the new place for 3 weeks before we had to leave. One of those weeks we were still bringing things over from the old place and for four days we were out of town for a wedding; we really were only able to make it livable but there are still boxes all over.
Anyway, that's it. I'll check-in after my steroids are done with an update on my eyes.
Have a good summer.
