Weeks 41 - 44 - dog days

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.

Weeks 35 - 40 1/2 - Best laid plans

Weeks 35-40-1/2 Post Lemtrada

July 29, 2020

This post was supposed to be done the day after my "I am still alive" post but here I am; a week and a half later.  My daily to-do list for the last 4 weeks has included yoga, an online Spanish lesson and a blog post. Out of those three things I've done a Spanish lesson once and yoga maybe 4 times.  I am clearly not the best at prioritizing and very good at getting distracted by the thing that is in my face at the moment.  For someone who still spends most of their days at home hiding from other people, I don't get much of my 'want to do' list completed which is a little depressing honestly.

I've had two rounds of blood work done since my last post.  I posted my June results on my pages a couple weeks ago.  I'll post my July results today.  My Tcells made a good jump from April to May and then again from May to June.  They went up just a little between June & July.  My Bcells made a jump between May & June and only a little rise between June & July.  When I got my results back this last month, I was told that the metabolic panel and the lymphocyte subset weren't required anymore.  No one mentioned that to me so of course I asked why.  My new Neurologist said it was because my numbers have been stable.  My Absolute Lymphocyte number is now above the lowest normal range but my Tcells are only about 50% of the lowest normal range.  My other Neurologist did not mention only tracking my T & B cells for a certain amount of time so I am suspicious of this change but I guess I'll find out more at my appointment next month.

My MS symptoms are the same numb fingertips and bouncy legs in the morning.  I was thinking yesterday morning that my leg spasticity seems to be here to stay.  It used to be a precursor to another relapse symptom but it's been constant since it started after my Lemtrada treatment.  The severity of it is up and down but it's always around on some level.  I've also been noticing when I am laying in bed in the morning my legs will periodically stiffen.  It's upsetting to realize the medication has made certain things worse or it seems that way.  Other health stuff: I got my DNA/compatible medicines report. I am pretty much compatible with everything but I need to use caution with Morphine, Naltrexone and one of the statins.  Naltrexone caught my eye but my Doctor pointed out it was for full dose Naltrexone and I was fine because my dose is so low.  I am fine to keep taking Wellbutrin.  I didn't feel anything for the first 3 weeks of taking the Wellbutrin after that I felt a small increase in my energy and mood but now I feel like it's leveled off to "ok".  I have a follow-up appointment with my functional medicine Doctor in a couple weeks.  The other thing going on is embarrassing to write but this is a blog about my medical journey so here it goes...I mentioned I was having bladder issues which is a very common MS issue.  The Doctor I was supposed to see to have that urodynamics test called me because Covid cases in Texas were on the rise again (this is in late June) and I had left a message because I was concerned about going into the hospital for the test.  She called me to let me know she thought it would be better to postpone due to being immunocompromised but that she was concerned about the level of bladder retention shown in that quick test done at my neurologist's office.  Apparently, I was right on the border where it could cause kidney issues.  She sent me catheters. I was very upset and depressed.   Then I got on with it, figured it out, talk to the urodynamics doctor afterward and she determined I was ok without them but use them if I felt I needed to. Done writing about that.

Nothing like getting older and a disease like MS to keep you humble.

We left Texas and headed north at the end of June.  Covid cases were already starting to rise more quickly everyday by mid-June.  We weren't planning to go anywhere this summer because we didn't want to risk the exposure of driving/traveling but it was clear that it was going to be safer to travel to a smaller town then stay in Texas.  We laid low for two weeks after we got here to make sure we hadn't picked anything up.  We've been here for almost 5 weeks now.  Cases have been on the rise here since the 4th of July but there are less people so things aren't rising exponentially like they were in Texas.  I am still being careful.  Even though exposure is less likely and my immune system is stronger then it was when this all started, I don't want to take any unnecessary chances.  Pretty much you are fine here as long as you stay out of bars. 🤷We've been getting out for some hikes and we saw Comet Neowise.  I included a couple pictures I took; both are with a 4 sec shutter; the close-up is with a 300mm zoom. 

Take care & mask up!