About Matt

Learn about my general story fighting MS.

What IS Multiple Sclerosis

Learn what Multiple Sclerosis (MS) is!

My Multiplesclerosis.net Aricles

I also blog for Multiplesclerosis.net and you can see my articles here!

My Youtube Channel

Click here to visit my Youtube channel; will be building it back up soon!.

My Dark Passenger

Many people have a nickname for their MS. What do you call yours?


Thursday, November 26, 2015


I had my turning point; I switched gear from depression to "let's get stuff done". So I decided that I am going to retire this blog (after I get it all fixed up) and start a new blog using a different platform so I have more power to customize my site and introduce new features to make it more interactive. It's going to take a lot of time and work (especially when it's so hard to see).

Something else it's going to take, money. There is a bit of a start up cost so I need to come up with about $100 for hosting before I begin since I will no longer be using free blogging service like blogger. After that I am hoping to get it running self-sufficiently pretty quick.

I also need a new computer. This one was made around 2009 and is really having a hard time keeping up with current software and even websites like facebook... Now I have no intention of trying to buy a brand new computer, no, that is too much money that can go to something else. I just need something that works so when this one gives out I can keep blogging uninterrupted. So I plan on buying a used computer on Ebay and refurbishing it myself to suit my needs. I can comfortably get one for about $200.

So my goal is to raise $300 to have everything I need to start a new, fresh, clean blog and finally take it seriously, as in, "this is my full-time job" seriously. Given everything that is going on in my life right now, I need this, I need this to stay mentally healthy which as you know, is sure to help me physically. Plus, this should greatly expand my audience which means I can help more people! I need to feel like I have a purpose in life again because that is really what I have been struggling with lately.

So if you would like to help support this blog and help get my new website set up, you can donate below! $300 is not such an unobtainable reality. Thank you for your support!

Thursday, November 12, 2015

Be Back Soon; I Feel So Beat

First of all, I want to apologize for not blogging in ages. While I was having my Lemtrada infused I just felt too ill and tired to write so I did some videos. Afterwards, I was so fatigued for a week or two and though I was slowly feeling better my dizziness/vertigo/oscillopsia/whatever was getting worse. Now it is to the point where it is difficult to walk. Just trying to "navigate" around my room causes me to stumble and sometimes even fall (luckily I have a nice soft bed to land on). Even when I am perfectly still thing are swirling. It's also like I just can't focus my eyes! It's horrible, I can not even explain it simply.

Anyways I just feel so defeated in life. I can't catch a break with my health after about 8 months. Social Security finally decided that I do in fact still owe them that 25 thousand dollars because despite the information my doctor provided and notes he wrote they know what disability really is, better than a neurologist who has actually SEEN me. I am 25, I can barely walk, I can't drive, I WANT to work but can't, am struggling with my bills and Social Security doesn't think I even deserve SSI. I don't want to and will do everything I can to avoid filing for bankruptcy because I am only 25! But I am just so burnt out and can't think of a better strategy yet... I keep trying to push myself to blog but I just do not have the energy or motivation to talk about my life right now...

I am going in for Solu-Medrol tomorrow which I have lost all faith in but what can I do? I did Lemtrada, lots of Solu-Medrol, Solu-Cortef, and IVIG. I have tried many other things in the past with no luck so after this, if I see no results, I have to start trying the alternative therapy stuff, mainly cannabis oil is what I am looking at but to get the stuff that has almost no THC and only CBD (no high) is expensive. But I am so desperate! I can't live on like this so either I have to find a way to fix it or deal with it and I really do not WANT to just deal with it... So I don't know, I am just living one day at a time till something changes and then I will have lots to write about.

For now? I am just taking it easy. So I hope everyone is doing well and I will be back as soon as I can. Be sure to check out MultipleSclerosis.net for my posts there, it's much easier to write about MS when it does not revolve around my daily life.

Saturday, November 7, 2015

My Therapy Report RE Dizziness/Vertigo

Thursday, November 5, 2015

Oscillopsia, Vertigo, BPPV; Trying to Get Back On Track

I am not even sure where to start… it has been so long… hopefully you have watched my videos because the whole Lemtrada thing really killed my motivation to do much writing. That and the oscillopsia/vertigo thing I have been dealing with. As far as Lemtrada side effects go I am feeling fine. Everything feels back to how I felt before Lemtrada so we will see over the next few months if I experience any positive changes.

Now the vision. Since around February (2015) my vision (and resulting balance) have slowly got worse. I was able to do most anything until recently when even walking became difficult. It’s almost like trying to walk on a boat passing through a storm, everything feels like it is moving. Forget driving! Eventually, I started wondering (for multiple reasons) if it was even MS related? Was it Bilateral Paroxysmal Positional Vertigo (BPPV)? When I turn my head to the left while lying on my back a rapid horizontal nystagmus is triggered and if it is positional like that then that would suggest something “mechanical” (like a calcium crystal in the inner ear canal breaking loose and moving around) but that would not explain why I have a difficult time tracking with my eyes when (for example) trying to read from left to right. My eyes “skip” suggesting something is wrong with my vestibuloocular reflex.. Could it really be a combination of MS and something else going on in my ear? What are the odds?

Well, today I saw a physical therapist who specializes in vestibular therapy (and is an instructor on the subject at Loma Linda University) and he did some test to try to figure out what was going on. They have a machine that you stand in front of (well it sort of wraps around you so you can’t see anything in your peripheral vision except the screen) that displays a computer generated environment and also the platform you stand on moves based on how you move. There are different tests; one may track which way you lean based on a moving environment and another causes the platform to shift around based on how much you move and so on. It was horrible because it basically eliminates your sense of balance. Balance is achieved through a combination of vision (it looks like I am upright), vestibular function (it feels like I am upright) and proprioception (the floor feels level against my feet). So the machine messes with these functions to show how strong each is. Since all my senses are kind of weak right now I had a hard time standing up and not falling.

After that we did some positional tests to see if moving my head a certain way would cause nystagmus and guess what? It did. Usually, it’s only one way if it is BPPV, which is how you determine which ear is the problem. I feel it whenever I am in certain positions looking to the left but not only did that cause nystagmus but turning to the right caused another type (different direction)! We did this while I wore special infrared goggles that made everything look pitch black to me, but the goggles had cameras in them that watched my eyes and displayed them live on a computer screen so any eye movements could be seen and recorded.

In the end it looks like it actually is a combination of a crystal that broke free in my ear and MS (I have a lesion in my cerebellum). What sucks is the crystal is stuck somewhere it should not be so we could not fix it with a simple and quick head maneuver such as the “Epley” maneuver. So I have some basic exercises to start working on that will help both the crystal break loose and also the neurological issue. I’ll do this for a while, see how I respond and then add more exercises slowly over time so we can see what each variable in my treatment does.

Hopefully I can fix this sooner than later but he did tell me that it can take anywhere from 6 months to 2 years. Everyone is different.

On top of that I really need to start working on my body’s strength. My quads are so weak now! I can feel my legs trying not to collapse under my own weight as I step up the stairs, which requires one leg to take all the weight while the other steps up. With everything that has been going on with my health lately I am just so unhappy with my body; more so than usual. So I literally have to rebuild myself. It’s hard because it will take a lot of work just to get me to where I was a year ago and then to get from there to where I want to be? This is going to take a lot of work. I have to develop some sort of health routine based on all the physical therapy exercises I have ever learned and all the regular “working out” exercises I know. I hate working out but at this point I hate feeling the way I do even more.

I will be trying to get some sort of blogging routine going again but for a while it’s going to be a lot of short posts just trying to catch everyone up on the stuff I have not written or talked about.

Bare with me!

Thursday, October 29, 2015

Youtube; 33 Days Post Lemtrada - BPPV?

Thursday, October 8, 2015

Youtube; Day 12 Post Lemtrada

Sunday, September 27, 2015

Youtube; 2 Days Post Lemtrada

Friday, September 25, 2015

Youtube; Lemtrada Day 5 - DONE!