Two years + 1 month + 3 weeks Post Lemtrada
December 5, 2021
Happy Holidays!
Can you believe another year is about to end? After my kids started school, time seemed to fly by. School years dissolve and blend into each other. But these last two years seem like they’ve been 10 but at the same time keep moving at a rapid pace. I know I am not the only one with this warped sense of time because many people have mentioned the same thing. For me it’s mostly because it’s going to be 2022 but I haven’t done much over the last two years and the things that did happen seem like they happened more than just a year ago. It’s a very strange feeling.
Anyway…on to the events of the last almost two months. I went on a college trip with my daughter; we had a lot of fun but I picked up the flu somewhere. I started feeling like I had allergies (drainage but not feeling bad) about 48 hours after we got home, 48 hours after that it moved into my sinuses so I went to our PCP. She ran flu and covid and I was positive for the flu. 😞 I had the flu shot the week before but it hadn’t been long enough to take full effect. I am glad I went to the doctor when I did; I started feeling worse and running a fever throughout that evening but she gave me Tamiflu and it seems to have shortened it. I started feeling better the next day.
I had an appointment with my Neurologist. It was uneventful…he showed me my MRI pictures and why he thought the new lesion was an artifact (it didn’t show up in other angles, he was surprised they even called it a lesion); we talked about my next Lemtrada dose; an alternative to Vyvanse (I can’t remember if anything was decided about that); and my thyroid. He said he does have patients that had delayed their Lemtrada treatments and are now going forward with them. I was thinking about doing it in February but now we have things going on the end of March, April and in May so I am conflicted between not wanting to be stressed and be able to concentrate on my treatment and wanting to just get it done. I have to be monitored monthly for 4 years after my second treatment; it’s already been two years and I just don’t want to make it any longer than it already has to be. If I don't do it in the next month or two, I am going to wait until the fall.
My thyroid is acting up again and my TSH numbers are back to zero. I had an appointment with my Endocrinologist this week. I was confused about how TSH and thyroid hormones worked together then my PCP explained it to me and it made sense but I forgot again because my Endocrinologist explained it to me and it made me realize I was describing it wrong. My thyroid hasn’t been on vacation; it's on speed. My TSH is 0 because my thyroid is making T3 whether I need it or not. I saw my Endocrinologist in person this week and I am glad I was able to. She checked the size of my thyroid and didn’t think it was enlarged but she thought my eyes looked slightly “bulge-y” and my T3 & T4 levels are high again plus my thyroid antibodies are high so she put me on Methimazole to slow my thyroid down. I started it yesterday. She has a few patients that had taken Lemtrada and some of them only need to be on it for a short time to “reboot” their thyroid, others cycle on and off. She said in extreme cases of Graves disease they do radioactive iodine treatment or remove the thyroid. Hopefully, it won’t get to that point. However if I do have my thyroid removed, my husband and I would have matching neck scars. I can’t think of anything more romantic than that. 😍 I used to be hypothyroid. I had been on 45mg (3/4 of a grain) of Armour Thyroid for at least 5 years. It makes me wonder how bad I would be if I hadn't been or maybe I just would have gone hyperthyroid faster.
We had Thanksgiving with family this year. Not my choice, some family is not vaccinated, and two family members had covid in the two weeks prior but I am not the only person in my family so I kept my distance, kept my mask on and didn’t eat anything while we were there. Thankfully, it’s been over a week and none of us has gotten sick. The Omicron variant is concerning but I am not going to freak out yet since we don’t know much. Even if it does end up being as bad as Delta, I am not sure I could change much. I still wear a mask in stores; I don’t have any more travel plans but I would reconsider those if I did and I only visit with people who are vaccinated. We don’t eat out much at home so I would probably limit that even more. My PCP did say that she still doesn’t eat inside restaurants that it’s still the biggest exposure point. She’s had plenty of patients who have gotten covid and that was their only exposure.
Overall, I've been feeling ok. The spasticity in my legs in the morning is more frequent. Not everyday and as always varying in strength but more frequently there. My fingertips are still numb; not better or worse. Emotionally I've been not so great. We have a lot of change going on; both kids graduating high school and getting their lives started, downsizing our house, etc. This I will blame on MS: I don't handle change well at all anymore. I never used to be that way and I am not old enough for this just to be an age thing. That's where I am, trying to deal with the everyday like your kids growing up, getting on with their lives and moving, and the non-everyday like figuring out what is going on with your thyroid, deciding when to do the next dose of a drug that will knock out your immune system again while trying to deal with the middle or end of a pandemic. It is a lot but a "normal" person would handle it, feel the stress, yes but handle it. I am left feeling dazed and crying about everything. By the way, I am still reading that book about the brain and autoimmune disease (I got distracted by a fiction novel for my book club🤷). There is something to that.
Can you believe another year is about to end? After my kids started school, time seemed to fly by. School years dissolve and blend into each other. But these last two years seem like they’ve been 10 but at the same time keep moving at a rapid pace. I know I am not the only one with this warped sense of time because many people have mentioned the same thing. For me it’s mostly because it’s going to be 2022 but I haven’t done much over the last two years and the things that did happen seem like they happened more than just a year ago. It’s a very strange feeling.
Anyway…on to the events of the last almost two months. I went on a college trip with my daughter; we had a lot of fun but I picked up the flu somewhere. I started feeling like I had allergies (drainage but not feeling bad) about 48 hours after we got home, 48 hours after that it moved into my sinuses so I went to our PCP. She ran flu and covid and I was positive for the flu. 😞 I had the flu shot the week before but it hadn’t been long enough to take full effect. I am glad I went to the doctor when I did; I started feeling worse and running a fever throughout that evening but she gave me Tamiflu and it seems to have shortened it. I started feeling better the next day.
I had an appointment with my Neurologist. It was uneventful…he showed me my MRI pictures and why he thought the new lesion was an artifact (it didn’t show up in other angles, he was surprised they even called it a lesion); we talked about my next Lemtrada dose; an alternative to Vyvanse (I can’t remember if anything was decided about that); and my thyroid. He said he does have patients that had delayed their Lemtrada treatments and are now going forward with them. I was thinking about doing it in February but now we have things going on the end of March, April and in May so I am conflicted between not wanting to be stressed and be able to concentrate on my treatment and wanting to just get it done. I have to be monitored monthly for 4 years after my second treatment; it’s already been two years and I just don’t want to make it any longer than it already has to be. If I don't do it in the next month or two, I am going to wait until the fall.
My thyroid is acting up again and my TSH numbers are back to zero. I had an appointment with my Endocrinologist this week. I was confused about how TSH and thyroid hormones worked together then my PCP explained it to me and it made sense but I forgot again because my Endocrinologist explained it to me and it made me realize I was describing it wrong. My thyroid hasn’t been on vacation; it's on speed. My TSH is 0 because my thyroid is making T3 whether I need it or not. I saw my Endocrinologist in person this week and I am glad I was able to. She checked the size of my thyroid and didn’t think it was enlarged but she thought my eyes looked slightly “bulge-y” and my T3 & T4 levels are high again plus my thyroid antibodies are high so she put me on Methimazole to slow my thyroid down. I started it yesterday. She has a few patients that had taken Lemtrada and some of them only need to be on it for a short time to “reboot” their thyroid, others cycle on and off. She said in extreme cases of Graves disease they do radioactive iodine treatment or remove the thyroid. Hopefully, it won’t get to that point. However if I do have my thyroid removed, my husband and I would have matching neck scars. I can’t think of anything more romantic than that. 😍 I used to be hypothyroid. I had been on 45mg (3/4 of a grain) of Armour Thyroid for at least 5 years. It makes me wonder how bad I would be if I hadn't been or maybe I just would have gone hyperthyroid faster.
We had Thanksgiving with family this year. Not my choice, some family is not vaccinated, and two family members had covid in the two weeks prior but I am not the only person in my family so I kept my distance, kept my mask on and didn’t eat anything while we were there. Thankfully, it’s been over a week and none of us has gotten sick. The Omicron variant is concerning but I am not going to freak out yet since we don’t know much. Even if it does end up being as bad as Delta, I am not sure I could change much. I still wear a mask in stores; I don’t have any more travel plans but I would reconsider those if I did and I only visit with people who are vaccinated. We don’t eat out much at home so I would probably limit that even more. My PCP did say that she still doesn’t eat inside restaurants that it’s still the biggest exposure point. She’s had plenty of patients who have gotten covid and that was their only exposure.
Overall, I've been feeling ok. The spasticity in my legs in the morning is more frequent. Not everyday and as always varying in strength but more frequently there. My fingertips are still numb; not better or worse. Emotionally I've been not so great. We have a lot of change going on; both kids graduating high school and getting their lives started, downsizing our house, etc. This I will blame on MS: I don't handle change well at all anymore. I never used to be that way and I am not old enough for this just to be an age thing. That's where I am, trying to deal with the everyday like your kids growing up, getting on with their lives and moving, and the non-everyday like figuring out what is going on with your thyroid, deciding when to do the next dose of a drug that will knock out your immune system again while trying to deal with the middle or end of a pandemic. It is a lot but a "normal" person would handle it, feel the stress, yes but handle it. I am left feeling dazed and crying about everything. By the way, I am still reading that book about the brain and autoimmune disease (I got distracted by a fiction novel for my book club🤷). There is something to that.
Alright, I am done openly publishing my pity party to the interwebs 😉.
We are staying home over the Christmas holiday. I hope everyone enjoys their holiday season.
Take good care
Take good care
PS sorry about the formatting of my last several posts. I was typing them out in Word first, there is no paste unformatted option, it makes you unable to change any of the formatting and the clear formatting button doesn't do anything.
