Weeks 45-51 - One year coming up

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.

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.