Week 104 - Happy Anniversary!

 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.

1 year + 10 months + 1 week - Summer Check-in

 

96 weeks or 1 year and 10 months - Post Lemtrada

August 24, 2020

I almost missed it but this is the summer check-in. There has been a lot that has happened and at the same time not much change since my last post.  We are hiding from the heat again in the north country.  We are on the verge of being empty nest-ers and are able to hide out a little longer than a typical year.  Texas is still a covid hot spot so we are not only hiding from the heat but also from the Delta variant.  Texas' 7-day average is up to 17,000+ new cases per day.  The area we live in is pretty close to the peak in new cases we saw in January. I don't know what else to say about that.  We know how to slow the spread of this virus; get a vaccine and/or wear a mask and keep your distance from other people.  It’s almost as if that personal responsibility thing doesn’t work. 🙄

When I saw my neurologist in April we talked about my Lymphocyctes possibly being at a new normal.  Then they jumped to 1848 in June and I was so excited that they reached a new high number! Then in July they were back down and August, down further. :( I know this is going to sound silly but if this my new normal I will be disappointed. I have always thought I had a really strong immune system.  I very rarely get sick maybe a cold once a winter even if everyone else in the house has a cold.  If this is my “new normal”, how does that effect my ability to fight off “regular germs”?  No one can really answer that because there are so many unknowns about how our immune systems work.  From just a lymphocyte prospective, my immune system is half of what it was pre-lemtrada.  Does that mean I’ll get twice as many colds every winter?  Will I get the flu every winter now (god, I hope not)?  These are the things inquiring minds want to know but for the most part Doctors can only take educated guesses.  In the wake of Covid, I hope they can learn more about how these things work.

 

The other thing that hasn’t seen much movement is my thyroid.  I saw my endocrinologist in June and she was very encouraged that my TSH went to .17 which she said seems small but my numbers have been at zero for so long that she considered it a step in the right direction and that sometimes the thyroid takes time to wake back up when it’s been shut off for so long. Great news! Right? In July it was back down .04 then to .03. :(  I had my TSH checked a second time in August right before my August follow-up with her because she also wanted to check my free T3 & T4.  At my telehealth appointment, a resident talked to me first and he told me my TSH was .50 which is the lowest level of normal.  Normal! Then the doctor came on and burst my bubble by telling me she was concerned about the accuracy of the lab result, it’s not normal for a TSH number to change that much in 10 days. T3 and T4 can fluctuate like that but not TSH.  :(  That’s now 3 :( ’s  if you are keeping count. ;). So I will be making the trek to the Quest lab in a week or so and will have my TSH checked with my usual monthly labs but she also wants to recheck my free T3 & T4 again.

 

In the next category of things happening but not much changing, is the previously mentioned covid is spike. I got a booster shot this week.  My PCP's office had called to schedule me to come in for one but I won’t be back to TX until next month.  I was just planning to wait until then but because the shots are more available you no longer have to be a State resident to get a shot in that State.  I will tell you that it sucked as much as the second shot did.  So when or if they start recommending boosters for everyone if you had a flu-like reaction to your second covid shot, you will have one with the booster too.  I felt like crap for about 48 hours. The chills (but not as bad), body aches (even my bones ached) and this time I also had nausea and some vomiting (sorry, it’s a health related blog). I am glad I was able to get it before I have to head back to Texas which is competing with Florida to be #1 at creating covid patients.  It also makes me feel guilty that there are countries that don’t have enough vaccine to vaccinate their population once.

Let’s see…I have a MRI scheduled in October then I am following up with my Neurologist and I also have an endocrinology follow-up but she said she would let me know about the newest lab results before that.  I am still currently planning to do my next Lemtrada infusion in February but of course that all depends on what is going on with Covid.  We might be fighting the Epsilon variant; I really hope not.

When I started this blog, the point of it was and is to help others who might be deciding to take Lemtrada have another story/experience that they could weight the pros and cons against.  I expected to have a pretty straight forward story of: this is what I did, this is how I felt, these are the symptoms that improved or didn't.  Who could have predicted that we would have a global pandemic and my journey would be so bumpy or so open ended really. It's a swerve that no one predicted and we just keep doing the best we can.

Stay Healthy