Matt’s MS is Back!

Yes! It has been a while! The longest break from blogging I have taken since I started blogging in 2010 right after my diagnosis! Well, I took a break for many reasons but let’s start with the most obvious; my new blog! I wanted a “fresh start” and since I started out on blogger, a free blogging website, I thought I would try the more “professional” blogging platform WordPress. You probably won’t notice many differences at first because I tried to make this blog look like what my old blog looked like which was surprisingly more difficult than I thought it would be – who would have thought? Maybe this is just too new for me but I don’t know, it’s up. So let’s do some catching up.

First of all, yes, this new blog was supposed to launch on January 1st of 2016. I had “big plans” for what I wanted to have ready to publish upon launching but as most of you are familiar with, the ups and downs of Multiple Sclerosis gave me an unexpected rough month and I just could not get myself to stare at a computer screen and try to learn a new platform with my current vision and fatigue. Trying to read the many lines of HTML felt like those images you always see on Facebook with a bunch of “I’s” and you have to find the “L”. So here I am 1 month later; better late than never right? This blog is REALLY barebones right now compared to what I had planned but it will just have to slowly come together as I slowly feel better.

Lemtrada Infusion OK, so what did you miss while I was being a ghost? Well, a lot of nothing honestly. At least that is what it has felt like… Let’s rewind just a bit before I “stepped away”; On September 21, 2015, I started day 1 of 5 of Lemtrada. The actual infusions went really smooth, I did have some flushing (reddening of the skin) but turns out that is completely normal and they did not even have to stop my infusion like they did. The following week was not really bad at all (from what I remember) but I was probably still feeling the benefits of the Solu-Medrol (IV steroids). The following couple of weeks is when it really started to suck; nausea!

I should say really quick, there was probably a lot more stuff I am leaving out but this is what stands out to me so this is what I am including in the “cliff notes”. I wrote down more details on my old blog which you can find by clicking H E R E

Cannabis Oil for NauseaI remember thinking that if this is how bad nausea is with a very small and short dose of a chemo agent then if I ever get cancer forget it! No chemo! I mean not really but you get it. All the nausea medications they gave me, all the over the counter meds I picked up, they took the edge off the edge of my nausea at best! Luckily I was overly prepared; while getting ready for this treatment I picked up a medical marijuana card (I live in California) and bought an oil extract. I grew up around potheads in school, customers at work, everyone in that part of town it seemed was smoking it and so, I grew to hate those people and I especially hated the smell so I already had a bias against it. But I was nervous about the Lemtrada side effects and thought I would give an oil (I refused to smoke) a try if I had to because hey, if it works it works. Well after none of those pills really worked I put a small drop of that oil in a gel capsule, popped it as I was starting to feel like spewing my guts out and a little over an hour later it was gone. I mean gone, 100% gone, not a trace of nausea! I was able to go about my day and eat without forcing myself to. No wonder cancer patients use this stuff! I had taken it pretty late in the day one time and I slept like a comatose baby, no insomnia! And the 2 to 3 bathroom breaks I usually have to take at night? Nope, it seemed to put an end to the urgency I had grown so used to. Wow, maybe there was something to this stuff after all? All I know is dealing with the side effects of Lemtrada without that small drop of oil would have been hell and remember, this is coming from someone who was a total skeptic, someone who would have never tried this stuff a year prior. “Sure they feel better, it’s easier to tolerate anything when you are high” but that was not the case. So that turned me into a total supporter of marijuana legalization.

Lemtrada RashAs the months went on the nausea went away and so did the minor rash on my arms, stomach, hips and back. Things were slowly getting better as far as the side effects but I was still walking with a cane and dealing with horrible vision and vertigo (oscillopsia and some sort of vestibular dysfunction). Once month 3 came around though, I was hit with a level of fatigue I could have never imagined. I still can’t explain it, I just know it makes the fatigue I had before Lemtrada seem like a joke! I wake up at 6 and by noon I am just done for the day and then around 8 or 9 at night I am crawling into bed ready to die…

Now this whole time I was having little mental breakdowns, not just because of all the MS and Lemtrada stuff but mainly stuff in my personal life that was only exacerbated by the MS stuff. I finally had an “I’ve had enough moment” and started trying to get some control of my life back. I started doing light exercises and stretching. Not just physical exercises but balance exercises and other things like vestibular exercises. It was rough but I am now almost at month 5 and walking without a cane again able to do a lot more stuff (like basic chores) around the house.

So my two biggest hindrances in life right now are my vision and fatigue. I still have my issues with depression and motivation but being able to do a little more helps. I am currently trying to get a new prescription for Ritalin as I had no issues on it in the past, it worked like a charm! Provigil (modafinal) gave me no energy but horrible insomnia and Nuvigil (armodafinil) made me feel kind of jittery on a good day and gave me a horrible headache on a typical day… As far as vision goes, I went to my optometrist the other day and wow, my current prescription is so not good. I now need a much heavier prescription and when I was looking through that big device that allowed my optometrist to find the right prescription everything became so clear! Crisp! It’s funny because I thought that how I see things right now, as far as clarity, was normal. I could not even imagine sharper vision, but in reality? My current vision is horrible! So I am still waiting for my new glasses to be done and I can only wonder if the horrid vision I had before Lemtrada (oscillopsia) has actually since healed; what if it has just been the fact that I am now walking around with the wrong prescription that has caused me to think my vision was not getting better? Like the oscillopsia healed just as my prescription changed so I never noticed the improvement? I think that is a stretch but who knows? The only way to find out is to get my new glasses, wear them for a while and see how I feel. I can’t wait!

So, for now, I still may not be as active online as I want to be but I will definitely be blogging on a regular basis whenever I can and then once I get my new glasses and something for fatigue I can only imagine the kind of work I will be doing! I know I still have a lot of work to do on this blog but right now it’s just not realistic; I am so hoping that it will become a piece of cake after a couple of “upgrades” in my life (glasses and something for my fatigue/cognitive issues). We will see! Thanks for being patient with me and thank you all who donated to help get this new blog off the ground! Take care!

8 Responses to Matt’s MS is Back!

  1. John says:

    Good job Matt. Keep up the good work. as you are able.

  2. Joey says:

    Great to read more. All sure sounds familiar of how fatigue can not be explained to a healthy person. Have you ever been on Ampyra?

    • says:

      yes, I have, didn’t seem to do anything. I got my Ritalin though, so if I can feel more alert and awake and…. less “foggy” I will be happy and be able to exercise my walking ability more haha

  3. Julia Williams says:

    Matt, I started reading your entries on the website a while back and there were so many things in your words that resonated with me. We are quite a few years apart in age, but our experiences, as with many MS’ers are very similar. I am particularly taken with your words today from your entry of 1/28 with regard to “MS Persona”. It was as if you invaded my brain and snatched the words right out of my head! This has been my feeling and my experience for almost almost 2 decade! I have had MS for this long, and have been using these phrases…”I’m fine”, Oh, I’m doing o.k.” and the like for so many years now that I really don’t bother to say anything else. Even when I am obviously not well at all. It is comical to me that people who cannot even tell at times the difference. The only one who could tell was my dear mother, and she passed away 9/2013. My best friend, greatest advocate and most knowledgable and only caregiver. I am happy you are blogging again, and grateful for your words! Keep writing. Therapy may be a help to you as you suggest. For me, thorough knowledge of myself, understanding of how I feel when I feel it became enough. Decided thatI did not have to explain to anyone that I am not feeling well as often as I did not feel well. I realized that what I wanted was for the people whom I cared deeply for to educate themselves on their own so that I don’t have to educate them, and to thereby notice me and that I wasn’t ok. That was what I needed. It took me a while to figure that out. I learned that my expectations were what was hurting means that , life isn’t perfect. Expectations of others is not something that I have any longer. I am a 55 year old woman now, and my navigation through life with this disease has changed tremendously from what it used to be. I tell the truth about how I feel to whomever inquires. I am honest with self always and well as others, and have no expectations.
    20 years with MS is a long time, and can teach you many things. I look forward to your words in the future, and would love to share with you if I can be of any assistance to you in the future. All the best!
    P.S. I am a fellow amateur photographer…did you say way back you liked the outdoors and took pictures?

    • says:

      So I didn’t mention this on but, sometimes I feel so good and making sure people think “I am fine” that I stop and think “is it a bad thing that I am basically this good of a liar”? haha? -sigh- I don’t know. But yeah, I am 25 and at this point I really have no expectations of people, I always thought it was just me being cynical.But yeah, I try to write about things (on that I know other people are probably thinking but may not know how to put it in words or just have never really tried. Also, yes, I started photography after I was diagnosed and I have not done anything in over a year since I have not been well. I want to get into macro photography soon, that would probably be easier on my MS and is something I have always found interesting. If I ever take photos of anything, I will post them here for sure :p

  4. Jae L says:

    Hi Matt. So first of all, I discovered your blog because I am an occupational therapy student who just started her neuro quarter in March. I vaguely knew of what MS was, but after reading your previous post and some other, I definitely have a better picture of what it is, and what it could do to those that are affected by it. I love how you are blogging your life as it is not only informative but inspiring and touching. Thank you for taking us with you throughout your journey and keeping such positive outlook! I know here you’ve mentioned that fatigue and blurry vision are interfering with quality of life, but I read on your next post that you’ve been prescribed to Ritalin and that it has been helping you get much better! I am very glad and excited for you!

    • Hi! Glad you find it informative! So actually, the Ritalin doesn’t work, I think it was just the excitement that I finally got it again. So then I moved on to Nuvigil, also didn’t work, but I am simply feeling less fatigued on my own. Also, it’s not just blurry vision, it’s complicated, but we can just throw it under “Oscillopsia” for now haha… Also, I will be posting links to my old blog that covers roughly my first 5 years with MS, this is just my new one I am still trying to get off the ground because I wanted to switch to WordPress :p

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