Matt's Multiple Sclerosis Story

Hi, my name is Matt and I was diagnosed with MS at the age of 20 in August of 2010. This is my story in progress!

So What is Multiple Sclerosis?

Multiple sclerosis: A chronic autoimmune disease that attacks the central nervous system which consist of the brain, optic nerves, and all the nerves in the spinal cord.

Why is My Chest Tight?

Tight chest? Feel like a car is parked on top of you? Well that might be the MS Hug...

Multiple Sclerosis Therapies

Learn about the available drug therapies (disease modifying drugs, or, DMD's) for Multiple Sclerosis.

Watch Me On Youtube!

Click here to visit my Youtube channel; I am in the process of updating it and getting it going again but for now you can see some old videos!

This is This is Why I Fight

When I showed up in a wheelchair to see my new neurologist after a 6 week stay in a physical rehab hospital and asked what I needed to do next to get back up on my feet she told me to "get used to the wheelchair, it's the coarse of the disease". Good thing I didn't listen!

Thursday, April 10, 2014

I am in Colorado

 So, if your wondering why I have not been posting in the last few days, here is why; I am in Colorado! It was sort of last minute but I came to visit an old friend who moved here about a year ago and also see some family that lives about 45 minutes from my friend (give or take).

I was always interested in Colorado, so is my dad, but then I started to worry that they would all be super conservative but I have quickly learned it depends on the city. Denver is pretty liberal so if you want some of that legalized marijuana that is where you go to get it. I am staying in Colorado Springs where I guess they are a tad more conservative; you won't find a marijuana shop here. Either way, they are so relaxed about things compared to California.

You can ride motorcycles and quads in most dirt areas and they don't really care, in fact, I guess they don't really mind you crossing the road to get to another spot, something you can't do in SoCal without you needing to be willing to try to outrun the police. Almost no one locks their doors to their houses or their cars (except us Californians who just can't get over that natural urge to “lock up”) and I am at Barns and Noble right now writing this entry; I just went to the restroom on the other side of the store while leaving my laptop, bag, and jacket at the table. I came back and it's still there! I would never do that in SoCal because there is a really good chance I would get back to an empty table haha. Auto laws are really relaxed, auto tickets are super cheap, and our “Californian Defensive driving” is considered offensive driving here. It's all so funny to me, I like it!

The temperature has been nice. 50's and 60's Fahrenheit (10's and 15's Celsius) mostly during the day dropping to around 32 F (0 C) at night so I feel great here even with altitudes up to 8,000 feet (2,438 meters) when I am used to about 1,000 feet (300 meters). I know some people say high altitudes are bad for MS but me personally? No effect. But that is just me.

There has been some snow but it comes and goes in like an hour depending on the altitude. I will walk inside and the air is nice and steady, walk back out a minute later to grab something I forgot in the car and the wind is gusting strong enough that I feel like I will fall over. 10 Minutes later? Steady. Actual weather! I almost forgot what that is like! My friend says that during the summer it maybe hits 90 F (32 C) a few days which is cool weather for a SoCal summer days where we see 110 F (43 C) pretty much every single day. I am so jealous! So I am going to talk to my neurologist and see if there is a way I can get my Tysabri done out here somewhere and if I can work out spending the summer here so I don’t have to hide in my room next to my portable A/C for 4-5 months because that get's depressing really fast. I will go out to walk at 5:00am and sometimes it will already be 80 F (26 C) outside... I get so depressed during the summer because I am stuck inside on the computer or watching TV...

Who knows, maybe I will end up moving out to Colorado instead of Washington since I have family and friends out here already. Seems pretty easy to find a room for rent for really cheap around Colorado springs as well. My friend's place is in a basement, hardwood floors, ceiling fans, two windows looking up to the sky, a bathroom, and a full walk-in closet along with full house privileges for just $500 a month and his room is large enough to have a fridge, microwave, couch, TV, computer area, and more. It's so nice! It’s like a studio!

He says getting a job is easy and there are plenty of colleges around here to keep working on a speaking career. I doubt there are as many wanna-be photographers flooding the market as well meaning I can make some extra cash on the side of what ever I am doing, So who knows, we will see! Time will tell! Be back soon!

Wednesday, April 2, 2014

My Experiance With Tysabri (Video)

I was asked to do a video on my experiance with Tysabri so here it is!

Friday, March 28, 2014

What is Ataxia? Inability to Coordinate Muscles

Ataxia (generally speaking) is simply the inability to properly coordinate muscles; It is experienced when trying to make voluntary movements such as walking, picking up objects, speaking, swallowing (think about it, there are a lot of muscle movements involved in speaking), or even controlling your eyes. 

How Can Ataxia Affect Motor Coordination?

Ataxia can most often be attributed to a lesion in the cerebellum, the part of your brain which (among other things) helps control the coordination of muscles. Most people with Multiple Sclerosis see this present when they try to walk; they may feel unsteady, lean from side to side, or even stumble. Ataxia is also noticed when trying to complete fine motor tasks; buttoning your shirt, writing your name, or even typing on the computer. When you think “I am going to button my shirt up” usually your cerebellum almost instantly plans out the necessary motor movements in your hands to complete this task. With ataxia, the planning of these movements is disrupted which makes you have to struggle to get your hands to do what you want them to do. This is a huge part of why I stopped playing the piano and guitar; I just couldn't hit the right notes without having to pause which disrupted the steady and smooth flow of notes that makes music what it is.

How Can Ataxia Affect Speech?

As I noted above, ataxia can also affect your speech. It is important to understand that ataxia is not the primary cause of most speech problems in MS; dysarthria (presenting as slurred speech) or dysphonia (which has more to do with respiration and the vibration of your vocal cords) are different than how ataxia affects your speech and also may not originate in the cerebellum. When you speak, the many muscles involved in this task are disrupted just the same as when you are trying to complete fine motor tasks. Your cerebellum just isn't planning how you need to use each muscle to produce the right sound. Certain sounds may be easier to produce than others which is why sometimes, someone experiencing an inability to speak smoothly due to ataxia, can pronounce certain syllables in a word just fine but will have to pause and try really hard to pronounce another syllable. The smooth rhythm in speech that should be produced is disrupted much like the smooth sound of music being played on the piano is disrupted when there is a lack of fine motor skill. This unsteady speech (requiring frequent pausing to pronounce various syllables) is known as “scanning speech”.

How Can Ataxia Affect Vision?

Ataxia can also affect the eyes which can (for example) cause involuntary back-and-forth eye movements known as nystagmus due to the inability to properly coordinate the eye muscles. Again, it is important to understand that this is not the primary (or most common) cause of nystagmus; the visual system is very complex and can be affected by many different parts of the brain so ataxia is just one of the many things that can cause nystagmus. 

How do you Treat Ataxia?

There is no pill you can take specifically for ataxia. You generally have to treat the underlying cause which in MS is a lesion flaring up. Like the treatment of many other MS symptoms, steroids and time are really the only options here. Of course for long lasting ataxia, physical and occupational therapy along with adaptive devices such as a cane/walker, modified utensils for eating, tools to help button up clothing, or communication aids can most certainly be of help.

Tuesday, March 25, 2014

I Don't Usually Drink BUT, Last Night...

I don't usually drink, I could never get drunk or even buzzed no matter how much of any type of drink I drank. Because I am not all that fond of the taste of most alcoholic beverages I just don't drink! USUALLY. Last night I was hanging out with some friends with the intention of playing cards. We all sat down. 1 person was not drinking anything and another was having coffee. Not sure about one person but two others were having rum and pepsi, the one thing I really like as far as taste goes. I had the choice of coffee or rum. Coffee... Or rum... I knew I should have took the coffee but after my last few weeks, I really wanted a drink even though it usually does nothing for me. And yes I know, Monday, don’t judge me haha! I downed my first glass and poured a second before everyone else finished their first. What ever right? It's just liquid! Nope!

All of a sudden I started to not see strait, I felt funny, what was this? Getting drunk? ME? No... That never happens! I kept drinking, this was a rare phenomena for me and I wanted to see what it did to me and my dark passenger, plus, it felt good haha. I have never felt so relaxed since I was diagnosed with Multiple Sclerosis! I opted out of the card game and just sat there enjoying myself haha.

Eventually I had to get up to use the restroom since alcohol is a diuretic (Diuretics promote the production of urine and excretion of water from our bodies; caffeine is also a diuretic). I could not stand. I asked my friend to help me to the restroom; as I held her arm I felt like I could not keep myself oriented and each step felt like when your walking up a flight of stairs and you think there is one more step but there is not so your foot stomps into the ground. Once I was in the restroom I felt like everything was spinning and I could barely stand and almost lost my balance when I turned to the sink. This was so weird! After we got me seated again I noticed my speech was slurring; This made me talk slower (since MS has made me no stranger to this symptom and I knew how to handle it) to compensate and make sure I pronounced things properly. All this was happening but I was still cognisant; I was talking auto immune disease with someone, I was still able to access all that information in my brain, I helped someone else with an Ebay listing on her phone, my mind was still there, maybe a tad slow, but my body was gone! I kept drinking till my second tall glass was empty than I stopped because I knew I had to drive home at some point since I couldn't fall asleep there because I had to get the car back for my parents by the next day.

We moved to the couch and my friend and I could barely stay awake! The third person was still talking to me about health stuff (since he has juvenile arthritis) and I was trying to stay engaged in the conversation but now I was realizing that I was having a hard time keeping my train of thoughts on their tracks, things were getting fuzzy. After a while of laying there I sobered up, became alert, kept the conversation going for a while, and than decided it was time to go home. My balance was still funny, walking down the stairs and across the street to my car was rather fun, but it was what the alcohol did to my MS, not the alcohol itself, I am not sure how to explain it but I could feel the difference.

I woke up with a headache today; quick! Grab the camera! Baby is taking his first steps! Is this what an actual hang over feels like? My balance was not perfect still but after a shower, coffee, and some fresh air outside while I watered the grass, I felt fine. Oh I should mention, I probably went to bed around 2:30am again and still woke up at 5 but stayed in bed till 7. Jeez... Stupid internal alarm clock!

I than went online to check for interactions between my medication and alcohol, maybe that's what did it since every other factor has remained the same and this has never happened to me! What changed? Klonopin? I checked for interactions between Clonazepam and alcohol and this is what it said:

 “! Moderate ! - Using clonazepam together with ethanol can increase nervous system side effects such as dizziness, drowsiness, and difficulty concentrating. Some people may also experience impairment in thinking and judgment. You should avoid or limit the use of alcohol while being treated with clonazepam. Do not use more than the recommended dose of Clonalpam, and avoid activities requiring mental alertness such as driving or operating hazardous machinery until you know how the medication affects you. It is important to tell your doctor about all other medications you use, including vitamins and herbs. Do not stop using any medication without first talking to your doctor.”

I had take Klonopin a few hours before I drank, and I definitely experienced an “increase in nervous system side effects” and keep in mind; It's saying that's what it would do to a “normal” individual. I have MS! I already have a sensitive nervous system. So instead of it being like throwing gasoline on fire, for me, it was like throwing gasoline on a barrel of oil that was already on fire! Assuming that this was the cause of this interesting experience. Baclofen had the same interaction with alcohol but I only took that in the morning. Nothing for Tysabri or IVIG (that I could find).

Moral of the story? I really enjoyed myself and felt so relaxed, I needed that. Though I have always been known to be against alcohol, after last night? I might do this again but of coarse not often and preferably not on a Monday night haha… I do want to mention, I am in no way shape or form promoting the use of alcohol especiialy not while on medications, consult with your doctor to see if it is safe!

“But why is the rum gone???”

Saturday, March 22, 2014

Trying to Get the Youtube Back Up

I Went Out Late; Be Good MS!

So I am a morning person. I wake up around 5:00am well before my alarm goes off. I have always been a morning person and I like it. There was a brief period of my life where I went and stayed out late into the morning but those days ended around the time I was diagnosed with Multiple Sclerosis. My dark passenger seems to punish me if I stay up too late so I am usually in bed around 9:00pm.

Last night I went out with a friend around 10:00pm, well after I am usually fast asleep. I knew because I was driving (and if I got pulled over while sober as can be I would not pass any sort of drunk driving test) that I should not drink. I don't drink usually but after the last few months and all that has happened? I really did want one but like I said, I was driving and because I never know how alcohol will effect my MS (sometimes horribly but usually not at all in fact, I have never been drunk and not for lack of trying) I prefer to drink in the comfort of my own home just in case so no drinks for me! My friend did all the drinking and it seemed like she needed it more than me haha...

I stayed out till about 2:00am and felt fine! Well... I sort of cheated... otherwise I would be asleep at the wheel. I drank super strong coffee about and hour before I left the house so I was wide awake and sort of afraid I would not be able to sleep when I got back home! What would this do to my MS? Would my symptoms flare up in the morning? I popped a Temazepam (sleeping pill) and knocked out pretty quick. I actually slept pretty well. Now Usually I am in bed around 9 and up by (let's say) 5:30am; 8 and a half hours. I went to bed around 2:00am and of coarse still woke up at 6:00am... I stayed in bed till 8:30 but even still that is only 6 and a half hours. I was so worried about my MS... I had a cup of coffee to start my day and now at 2:30 I still feel fine! Very surprised!

I don't plan on making a habit of this with summer coming up (I like to wake up early in the summer so I can actually go outside for a bit before the sun rises and heats things up) but now at least I know I seem to do fine with the late night thing because I don't even feel like I missed any sleep; I was just surprised when my alarm for my medication went off at 1:00pm because I was not hungry for lunch like I usually am by 11:30! I have still been taking it somewhat easy today just in case but I am sure I will be back on my normal schedule by tonight no problem! 

Friday, March 21, 2014

MS: My Dark Passenger

Multiple Sclerosis; MS; The Monster; The Beast: there are so many names for this disease that people refer to it as. "Oh the monster is showing it's ugly ace again today" someone might say when experiencing some sort of flare. I have never called my MS anything, it just wasn’t me, I always felt a lot of these names were too... cute? They didn't do the evil known as Multiple Sclerosis any justice is what I mean I suppose. For my MS, I called it as it was because nothing really seemed to fit my MS as I experienced it, so no nickname for me.

Today I got an email from a fellow MS'er and she brought up the name thing and what she called it asking me if I had a name for mine. I answered "no" and pretty much left it at that. Then I sat down for lunch flipping Netflix on to watch "Dexter" as I have been doing every day for the last couple of months or so (awesome show). As I watched I was still thinking about this email I had just received. Then it hit me. Dexter refers to his urge to kill as his "dark passenger" that sometimes he could control and sometimes would get the best of him. That's it! My dark passenger! MS! My MS is my dark passenger.

I am on a ride along life that I was hoping would be just me and maybe a nice girl someday. Kids? Who knows. But now it seems that something else has hopped on along for the ride. Multiple Sclerosis. My dark passenger. I now have to ride threw life with this dark passenger that I don't want riding along with me but unfortunately it is in it for the long run. This uninvited passenger is doing everything it can to slow my ride down or even derail it. Most the time I can control it, suppress it, keep it at bay, but sometimes it wins. Sometimes my dark passenger takes ahold of me forcing me to lay down in bed or stay in the hospital. Sometimes my dark passenger makes me do stupid things, forget important information, names, dates, and sometimes my dark passenger causes me pain; both physical and emotional. Sometimes you may try to talk to me and think "wow, Matt is not himself today, he is being a bit of a jerk". Well that would be my dark passenger. It has greatly altered my life and now it finally has a name but that doesn't make it any more powerful. This is the name that I gave it, I gave this evil a name because I own it. Now? Now I own it a little more.

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