Weeks 14 & 15 - Supplement overload

Weeks 14 & 15 - Post Lemtrada

January 31, 2020

Crazy that we are already a month into 2020.  We had friends visiting the last half of last week and into this week so I missed a post...sorry. 🤷 I hope they weren't too bored.  I tried hard to keep up; we climbed a granite outcrop on Sunday and walked around town on Monday.  Both days I was heading to bed around 10.  Two days of being really active, kind of wiped me out for the next several days.  My daily "bucket" of energy is definitely smaller than before and when it's used up; I am done.  Luckily, my husband is a pretty good tour guide.

Still no Rituxan 🙄 I logged into my insurance company's website last Friday and saw that they denied it and I got a letter from them this week saying it was denied because it was considered "experimental".  I have not heard from my Doctor on what they plan to do but I do have an appointment with them on Monday.  To say I was irritated would be an understatement; insurance companies are a necessary evil in this Country and I hate them.  The health system in the US sucks and that's all I will say about that here.

My energy level in week 14 was still pretty up and down.  I had mornings where I woke up feeling exhausted and it didn't make sense because I had slept well the night before and days when my energy level was fine.  Even on the "fine" energy days, I still have a limited supply.  If I spend the day running errands, I spend the evening/night on the couch.  I also spent more time then I should in my head about how I've been feeling.  Except for numbness in my legs *knocks on wood*, I have all of my typical MS symptoms hitting me all at once; light headedness (I haven't had since mid-month), spasticity/ bouncing in my legs, numbness in my fingertips, forgetfulness/trouble concentrating, fatigue/lack of energy and just being in a blah mood.  I took a risk by taking this medication, I never felt better (except when I was on steroids) and now I feel worse.  😞 This week all my symptoms are the same but I haven't had as much time to be in my head.  Yay for distractions! 👍

I've grocery shopped for myself three weeks in a row and I've actually eaten in restaurants! 😉 I am coming out of my shell slowly and nervously.  I will definitely admit that it makes me nervous but I do tend to be a worrier.  Oh, one of the doctors in my neurology clinic told me that after the Rituxan I won't have to take any new precautions because the Rituxan only goes after my B-cells and my T-cells are coming back at a good rate.  That's definitely good news and one less thing to worry about. If and when I actually do the Rituxan.

I had my follow-up with the Functional Medicine Doctor today.  I got results from the spit/cortisol test; the hormone blood test and the NutrEval test.  Actually, for the most part things looked good.  I have a few things that are a little off and maybe fixing that will make the difference.  The most glaring thing was that I have very little probiotics which makes sense because I was taking antibiotics for the last 3 months.  The second most would be my Omega-6/Omega-3 ratio because I don't eat much fish; that's an inflammation issue.  The good news is I didn't have any toxic levels of contaminants, my thyroid levels look good and things that I am semi-low on can be fixed with a SUPPLEMENT.  You should see my daily pill box! Hope it helps. 🤞

That's all I've got for now.  I'll do a quick update on Monday after my Neurology appointment if there's enough to update you about. Take care

Week 13 - Rituxan waiting game

Week 13 - Post Lemtrada

January 19, 2020

Super busy and very up and down (energy-wise) week.  I had days when I barely did the minimum and days that I was ok.  No news on the Rituxan but I did get my new lab results.  I posted them on my pages.  All the results are within expected range.  My B-cells went up more than my T-cells again.  My TSH (thyroid) number dropped but is still within the normal range.  I think my hair is falling out a little more than normal and it maybe due to the lower thyroid number but I'll wait to see what the functional medicine doctor says.  I have a follow-up with her on the 31st.

I did a couple things this week that I had been avoiding.  I actually did my own grocery shopping this week.  I have a 3M mask/respirator for air particulates that I've worn when I had to go into my PCPs office, when I took my husband to the surgical hospital for shoulder surgery and when I had to go into the pharmacy.  I debated wearing it into the grocery store.  It looks silly and people look at you but I decided it was more important to protect myself.  I am not totally defenseless now but I am still below the "normal" low end and the grocery store is filled with old people and young kids during the day. 😳😷 I went to a coffee house to see my daughter's band play.  I hadn't seen them play yet and it was going to be my last chance for the foreseeable future.  I showed up right before they started, stood way in the back and left as soon as they were done but it made me soooo nervous.  They played with two other high school bands so there were ALOT of high school kids there. I brought my mask but didn't put it on because I had enough distance around me.

My symptoms are the same; some numbness in my finger tips, some morning leg stiffness/tremors/bouncing, energy levels are up and down.  I started the progesterone on Monday night, and the brain supplement. I haven't noticed a difference yet except I am breaking out a little bit on my forehead.  I made a face wash switch a couple weeks ago so it could be that too.  That's about it; nothing too exciting.  Another week of moving forward.