About Matt

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My Dark Passenger

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Saturday, July 25, 2015

Oscillopsia - SSI - I have Had Zero Motivation

Wow. I just have no motivation anymore. I am just so tired. I don't want to write and when I do I can't think of what I want to say or how to say it. My cognitive function is just horrible. I literally feel like I would achieve just as much if I was in a coma. All I can think about is getting Lemtrada. I am just hoping that the steroids I get with it are enough to start fixing this vision crap, I am just so over it.

Speaking of vision, I saw an ophthalmologist the other day, well sort of. So I checked in. Nurse sat me down and asked me basic charting questions. Then the doctor came in and looked at my eyes. He said it was oscillopsia and then stepped out. The nurse came back in and put the drops in my eyes to dilate them. Then she moved me back in the waiting room and I was still thinking about the oscillopsia thing. Then I realize I had to go to the restroom. The one on the floor I was on was occupied so I went downstairs. Then when I came out I saw my brother (who gave me a ride) in the food court so we went home...

Later I got a call from the clinic asking where I went. Oops! I just left! They were waiting for my eyes to dilate and I guess I just lost myself on my "quest" to use the restroom! Wow I felt so dumb! So I have to go back in a week but I am not really sure why. We got a diagnosis and they confirmed there is nothing you can to to alleviate it so what is the point? Well who know, I guess I will find out. I got nothing better to do haha....

So on another note, let me give you an update on the Social Security mess I am in. So let's see, they stopped my benefits in January 2015 and was told I owe every penny I ever got from Social Security back ($25,xxx). In March I finally was able to get to the SSA office where I filled out the paperwork to request a reconsideration on my claim. "If you don't hear back in 2 weeks give them a call". I did but they told me they see no record of me ever even going in. So I went back and refilled out my paper work. They tell me the same thing and when I call they tell me the same thing again! So as I keep receiving threatening "give us money" letters I keep writing them and calling them. No luck. Last lady gave me a list of all the forms I need filled out and told me to send them in. So I filled them out and made copies of everything and sent it all in via priority mail so I could track it. A couple days later I get a call from the SSA asking what I wanted them to do with all that.

"what do you mean?"
"well you already have a claim pending, since March, so do you want us to cancel it and start all over?"

I explained what has been going on and he said he would send everything back to me. So apparently, that first form I submitted in March did actually go through but everyone I called did not seem to know what they were doing and so they sent me on a witch hunt!

I forgot to ask how much longer this should take because they told me "about 2 weeks" in MARCH and it's almost August! I need financial support, my health is only getting worse and instead of focusing on my health I am constantly stressed about how I can scrounge up enough cash each month and next month I think I am totally screwed... Social Security is the "best"...

Thursday, July 16, 2015

Zoster Vax & Edible Cannabis

I finally got the Zoster vaccination (for shingles) so now I just have to wait 6 weeks until I can do Lemtrada. So glad that I have something to count down to. It will be even better when I have an actual date on the calendar haha…

So while I am waiting on that I found something to help “pass the time”. I decided to get my “medicinal marijuana card” the other day. I thought there would be a slightly lengthy process that would involve submitting an application to the state before I could actually purchase anything but nope, 20 minutes later I had everything I needed to get what ever I wanted.

Now I am not interested in getting high, I am interested in the ant inflammatory properties of CBD (which can actually cross the blood brain barrier) but because I thought I would have to wait a while before I could buy anything I was not prepared with research. So I was not sure what exactly I was specifically looking for… so I just bought a brownie.


I went into this with an open mind but still pretty skeptical. If medication didn’t work why would a stupid plant? The stoner kid in the shop said to just take a bite. ONE bite because half was enough to screw him up. Since I was skeptical I ate a quarter of the brownie… Yep, that was too much. That is some potent stuff! I am not too sure how it affected my symptoms because it knocked me out; like 50mg of intravenous Benadryl haha… I took a little less before bed and I slept pretty well and didn’t have to get up to use the restroom; that was a nice change. Sleeping all the way through the night; I am not used to that… It is weird… I mean… Nice?

So anyways, I am not sure what strain of cannabis that was but it definitely was full of THC. So now I have to find a specific strain with high levels of CBD that may help various symptoms without making me feel high. Funny though, this is nothing like alcohol or what people have tried instilling in my mind about cannabis. Just as I suspected it feels much safer… especially compared to most the medication I have been prescribed like candy over the years.

I will write about the moral debate regarding cannabis for medicinal use later but for now just know; I have tried everything else to get some symptom relief and I was pretty much out of options so I decided to give this a try.

It has peaked my interest…

Saturday, July 11, 2015

The Culprit to My Current Hell

I finally picked up the disk of my MRI from March of 2015. I had already seen this slide in my neurologist's office but now I can show you what my brain looked like when this "relapse" was not even that bad! The report states "There is a new 1.6 centimeter hyperintense T2 lesion involving the left cerebellar preduncle" and though there are a couple other new lesions throughout my brain this is the largest and the one causing me all my grief. So really it is the only one I really care about right now. Specifically speaking it is the one causing my dizziness and visual symptoms (like vertigo). Again, this was done in march when thing were really not that bad. Things are incredibly worse now so I can only wonder if this lesion looks any different over 4 months later since it has progressed so much.

Let me try to some up the weird visual symptoms I have attributed to Oscillopsia, Nystagmus, Vertigo and dizziness. I don't know what this is, I don't know what to call it, it fits into the definition of so many symptoms. So this is sort of what it feels like; imagine spinning in a swivel chair really fast for about 10 seconds and then stomping your feet on the ground causing you to stop abruptly. Then you try to stand up and walk. This is why I would say I don't feel like I am spinning because I imagine feeling like I am spinning is like spinning around in the swivel chair where this is what it feels like to try to walk AFTER spinning around. I turn my head 6 inches to the side and it looks like everything is zooming past me like staring at the lines on the road in a speeding car. I also seem to be able to track my eyes meaning follow a moving object with my eyes smoothly. If I stare at something and move my head left and right the object I am staring at looks burred like it's moving really fast not fuzzy. Sometime I feel nauseated but most the time I am used to it enough that it doesn't get to me though most the time my stomach does not feel completely settled. Obviously with everything "zooming around" my balance is crap and sometimes I feel like I have really poor depth perception when reaching for something like a pen or a cup of coffee. The vertigo sensation is aggravated my my head orientation; if I am sitting at my desk things feel steady enough for me to surf the web a bit but I hate trying to read. Now, if I lean my head back on the back rest so I am looking up at the ceiling I feel like I am spinning in space. I bring my head back down and it takes a minute for me to feel like I am no longer spinning. Same thing if I turn my head to the side so my ear is facing the ground. If I turn my head left or right too fast it feels like the world is still moving in that direction for a few seconds after I stop my head as if there is a huge momentum at work.

Again, I am no longer sure what to call this but I do see an ophthalmologist on the 23ed so maybe he can shed some light on this. Ultimately I just want to start Lemtrada because between that and all the steroids I am hoping it will calm the inflammation down enough that the world will stop moving and I will have some steady vision. I am waiting for my insurance to approve the cost of a shingles vaccine (please no anti-vaxer comments haha) and then I have to wait 6 more weeks after that before I can start Lemtrada. Ugh, patience...

Thursday, July 2, 2015

My Symptoms, Medication and What is Going On

Still no better. 
I feel like I am just wasting time saying that. My vision felt like it was at least “leveling out” the other day and I was getting around OK but the next morning it went back to sucking. You know, at this point I am not sure what to call my vision; what I am experiencing fits into the definition of both dizziness and Oscillopsia so I am never sure what to call it, I have just been switching around haha…. I see a neuro- ophthalmologist at the end of the month so hopefully that will shed some light on what ever this is so I know what to call it. I want to do a post purely on trying to describe my vision and how it feels so I will do that soon. I am still trying to think of ways to make it a little more simple to understand. For now just know that moving around makes it worse which means all I really want to do is sit or lie down depending on how fatigued I am.

My balance is horrible; I do use a cane when I am outside of the house (where I have walls to lean or crash into). I don’t seem to notice a difference with Ampyra even with the crazy low expectations I had. Lots of people say they didn’t notice a difference till they stopped it but I have stopped for about a week and everything felt the same so I don’t think I will refill that prescription yet. I just had to pay $125 for 3 months of Aubagio, I have to do an expensive vaccine before I can start Lemtrada and I finally had to set up a payment plan for all the money I owe to my medical clinic. None of which would be a big deal if I had an actual income! Most people my age worry about having enough money to buy things they want or to go out but I get to worry about having enough money to be able to just live. Funny… Oh well, just a thought I had, but good thing I got my tax return haha…

So since I mentioned Lemtrada I’ll talk just a bit about that. I have about 2 more weeks to let Tysabri wash out of my system and then I can get Lemtrada in me. I really hope it works out OK. I am comfortable and confident that I will do just fine so I just hope it will work because I have been watching other people’s experience with the drug on youtube and doing lots of reading about immunology and though I am nowhere near confident enough to explain how it all works I know enough to make an informed decision. Also, before I get all the hate mail about how I am stupid for doing “chemo therapy” let me just tell you that you’re wrong. Alemtuzumab (Lemtrada/Campath) is a monoclonal anti body making it much different than the conventional chemotherapies used to help treat cancer. You see those therapies wipe out all your immune cells in hopes that it will get the one thing they are really trying to kill. Alemtuzumab is able to target those specific cells and not kill everything else. Think of it like this; traditional chemo is like a nuclear bomb that just kills everything but Alemtuzumab is like a smart bomb that can hit a very specific target within a few meters. Also, when Alemtuzumab was used as chemo for Cancer it was given at a much higher dose; 30mg for 12 weeks where Lemtrada is only 12mg for 5 days… Try to use LDN to treat opioid dependency, it won’t work, because it is a “Low Dose of Naltrexone” meaning it’s not going to have the same effects of a regular dose of Naltrexone. So technically the medication is a chemotherapy but a really low dose.

But either way it does still have risks just like any other medication. What is important for people to understand is I have no desire to live like I am now so if I can take a risk to control my MS but in turn get another disease? So be it. I would rather focus on treating that than living every minute of my life with something that can be treated. Bottom line? It’s my decision and I and I alone get to decide what is worth it or not. Think it’s stupid? Then don’t use Lemtrada but for me it’s worth the risks.

Moving on. Next time I do blood work we are going to check to see if I started producing neutralizing antibodies to Tysabri. I told my neurologist I just want to know if I did all this to myself by stopping Tysabri or if it was just going to happen either way. I also ordered my MRIs from a few months ago; I am falling way behind on my record keeping and I would also like to see them again and share a few pictures.

Oh yeah, last night I had horrible insomnia. I lied down just before 9 because ironically, I was just so tired. But my brain just would not turn off. Last time I saw the clock it was a little after 11:00. I also was disturbed by a muscle tremor in my left shoulder as if someone was electrocuting me. It kept jumping up! So I picked up some Clonazepam last night and I had no issues last night.

Let’s see, other symptoms I have noticed; my left hand has really pour coordination and intention tremors. If I try to touch my left index finger to my right, then the middle finger, sing, and pinky, the left side shakes like crazy and it is hard for me to make them actually touch. I have had a weird tremor in my left shoulder but looks like it was because I stopped my Clonazepam, minor clonus (especially on my left side), when I am moving around (say the kitchen) and not really thinking about it I find myself reaching for something but I either come up short, reach too far or miss it completely to the left or right. Again, usually my left hand. So maybe it is more of an ataxia? I don’t know and don’t really care right now. I can’t really do the whole heel to shin test (left heal on right shin), my reflexes are really sensitive (hyperreflexia) and of coarse if I close my eyes I can’t even put my feet together let alone put my arms out. I am sure there is more but that is all I really can think of right now because most of it all just feels “normal” to me at this point and I have got used to it. Of everything though, I just want my vision back because that is the biggest hindrance out of everything and causes other symptoms (such as balance) to get worse. Oh yeah, my cognitive function is horrible! Poor memory, problem solving skills, reading comprehension, staying focussed on anything and even understanding simple directions. It is very weird.

It’s been 4 weeks and one day since my last Tysabri infusion so I have 2 weeks before it has washed out enough for me to start Lemtrada and despite what anyone may say, yes, I look forward to the possible benefits. Notice how I said that and not that I look forward to the actual drug. So please save your hate or SPAM for another post :p because I am just hoping I will be able to see and get around in a month or so.

Tuesday, June 23, 2015

Heat, Dizziness, Negative Progression and Aubagio

Wow. It has been hot and it’s only getting hotter. We have been in the triple digits (-37+ Celsius) and just trying to maintain the temperature in my room was at first hopeless! It was hitting 79 (26 Celsius) in here with both the house A/C and my portable A/C on full blast! It really didn’t help with me feeling horrible… Luckily I have got that figured out. I repositioned my A/C, messed with the venting, put a box fan by it to help blow air into the corner of my room (rather than letting it just settle) and mow I can keep it between 70 and 73 degrees (21-23 C), which feels fine to me. I still prefer colder but well, people in hell want ice water right? So battling the heat has been miserable because even though I got my room figured out it is still hot everywhere else. The rest of the house is noticeably warmer outside my room and because it is so hot outside I have been trapped in my room. Siting and lying down all day is certainly not helping my health and I am so stir crazy!

On top of that I can barely function because of how dizzy I am. Oscillopsia, vertigo, dizziness – I don’t even know what is what anymore. All I know is I have a hard time seeing and moving around. I think the easiest example (but not that spot on) would be to say that everything looks like I just spun around really fast in a swivel chair and suddenly stopped to immediately try to get up and walk around. I don’t feel dizzy as much as I see as if I were dizzy. Everything seems to still be in motion, especially when I move my head or eyes. But where it used to be pretty limited to occurring when I move my eyes/head now it is hitting me while I am sitting still making reading, the one thing I could comfortably do, difficult. I try to read an article online an my eyes skip so much I loose my place and find myself in the middle of the wrong paragraph. Typing is no fun either; I double tap keys or hit more than one at the same time. Not only has typing been tricky physically but also mentally! I have (in the last few years) always had this weird thing where I leave the suffix off a word. I might leave an “s” off the end of a word, an “ed”, “er” etc and lately it has been horrible! Or I will write the wrong word completely! What I am thinking doesn’t seem to come out right! “Well why don’t you just use something like Dragon speech to text software?” Because even when I speak I can’t get my thoughts out! I start saying the wrong words or tripping over my words and occasionally slur so it is equally frustrating. So I am trying to slow everything down but it feels like my thoughts are trying to race out of my head only to all bottleneck at the exit. So everything is progressing negatively instead of getting better every day. I hate this.

Aubagio was really giving me some flu like symptoms at first. I managed it with Ibuprofen and now (over a week in) I seem to be doing OK without it. I just can’t wait to start Lemtrada. I know it will more than likely make me feel worse for a while but I just want something to change! I want to feel like I am doing something… My neurologist is certain this is just a bad relapse and that I will get better. He said not to sell my car (yes, I asked haha) and just be patient. It’s just hard, it’s been 6 months of getting worse and worse and the days feel so long. I am a pretty patient person but the only time I am not constantly aware of my symptoms is when I am asleep! Kind of hard to keep my mind off of it…

Tuesday, June 16, 2015

Tysabri, Aubagio and Lemtrada

First let me just say, it is so hard to type right now… My coordination is not perfect so I miss keys and my fingers are kind of shaky so I double tap a lot. I try to catch it all but my vision has continued to get worse day by day so… most likely there will be weird spelling errors. On top of that I do not feel well so I am keeping it really short.

I saw my neurologist yesterday; I was the last patient and everyone was going home so he basically saw me after hours. We talked and since I was still getting worse we agreed it was time to switch to Lemtrada. We did not talk about it directly but it may be that I developed a neutralizing antibody to Tysabri. It happens and it basically means that my body started producing antibodies that neutralize the effects of Tysabri.

So I am doing a 6 week wash out before I start Lemtrada. That just means I am waiting for 6 weeks for the Tysabri to clear out of my system. To help bridge me from Tysabri to Lemtrada without (hopefully) rebounding I started Aubagio today. I seem to have body aches and I feel hot but I am not; luckily no nausea. But since my last infusion was 2 weeks ago that means I can start Lemtrada in 4 weeks.

I have a feeling the next 5 weeks will not be fun but if it works it will be worth it (again, I hope) as it’s 5 days in a row of Lemtrada infusion and then 3 days on Lemtrada infusion and then…. That is it. Just lots of blood work and monitoring. I can’t get into it all right now but maybe my next post, hopefully some of these side effects start to subside…

Saturday, June 13, 2015

I Have Been Having a Rough Time

It’s been about a week since my last post. So much has happened. It’s funny because long ago I would blog every day even if nothing happened; now so much is happening that I should be writing about but I have just been do… run down… unmotivated… depressed… I could not get myself to write at all so now when I try to look back at when I did this or when I did that I really have no record. Symptom progression and medication changes… I didn’t keep any record so trying to figure everything out is going to be near impossible or very difficult at best. So let me try to update you.

Since my last post (over a week ago) I have been getting progressively worse as far as my symptoms are concerned. My vision would be far worse upon waking up every passing day. Now I think back to a few months ago and realize it didn’t suck that bad despite my thinking the same exact thing at the time. I think we always think “this is the worst I have ever been, I can’t do anything” and then it gets worse and you realize how much you really could do a week or two ago. I suppose it’s natural because no matter how hard I try to think “it can always be worse” I am still surprised everyday. We take so much for granted… You don’t know what you have until you loose it even if it’s just the ability to walk across the backyard and dump compostable waste into the compost bin. A rather mundane task but once you start loosing the ability to do it you start to miss that ability.

So let’s talk about symptoms. My vision is so much worse. Oscillopsia, Nystagmus, I don’t even know. It just sucks. Before it only presented when I moved my head but now it’s even there when I have my head perfectly steady and then why I move it gets worse! I also noticed the other day that my head’s orientation makes a crazy difference! I was lying down trying to watch TV but it was hard to see so I tried rolling on my side to see if a different angle would help. As soon as I rolled on my side (head sideways) my vision went crazy like the earth started violently shaking. I could not focus on any one point and I felt so dizzy. I tried and tried to steady my vision and focus on a single point but I could not so I gave up and turned back over and it immediately stopped. It was really weird.

Obviously it was some strange vestibular issue, which makes sense because my vestibular function has also been rapidly falling apart. Have you ever done what I believe is called the Romberg Test? Put both feet together, close your eyes and extend your arms out in front of you? Balance requires one of three functions; vision, vestibular (what people call your equilibrium – it’s in your ears), and proprioception (which for the sake of this exercise is your body’s ability to tell where your limbs are in relation to each other). This test eliminates vision so you are only relying on your vestibular system and proprioception. Before this “relapse” I could do the test just fine. Then I started to not be able to do it… I would start to sway and fall over but it didn’t feel like I was moving; I only knew because I could feel the ground pushing harder on one side of my feet than the other. I open my eyes and hey! I am falling! Now I can hardly do it with my arms at my side! So this means I am mostly relying on my vision (which is moving) and proprioception. In other words, 1/3 of my body’s balance gauges is almost completely broken, 1/3 is compromised and the last 1/3 probably is not 100% but works the best out of them all. My balance sucks.

OK the third worst symptom has probably been fatigue. I have just been so tired! But when you have zero motivation and a little depression, fatigue is sort of inevitable. So cognitively? I have not been able to think clearly. My problem solving abilities has been pathetic and my memory is total crap. My processing speed is so slow! I will also find myself having trouble with simple tasks. Kind of like holding your razor and toothpaste tube and knowing something is not right about the picture but not knowing right away that “oh wait, I should have my toothbrush”. When I first started losing motor functions I thought, “ok I may not have a fully functional body but at least I have my brain” and so I focused on working out my brain instead of my biceps. So with that in mind you should be able to see how hard this has been on me. It’s like I am loosing who I am. It’s so frustrating.

So I have been working on managing my stress and trying to get better sleep. Much easier said than done haha… But what about medication? I have been trying all sorts of things. Mostly for my vision but I really have no expectations of anything helping but I figure I can’t say “I have tried everything” until I really have. Over the week I crossed Baclofen off the list and now I am trying Gabapentin. I started it yesterday. I don’t know how long it is supposed to take to kick in but big surprise! Nothing as of yet! But yeah, it has only been a day and a half so I’ll keep on it for a while to see if I start noticing anything. Here is the problem; I have been on it many times in the past for different symptoms and it has never done anything but this time it seems to be causing me dizziness! I know this is a symptom that some people may only experience for a few days but I can hardly walk! I did however check if any of my medications interact and surprisingly pretty much all my medication interact with Baclofen and Gabapentin possibly causing “dizziness, drowsiness, and difficulty concentrating” So I am stopping the Baclofen today (since it does nothing for me) and if stopping Baclofen and continuing Gabapentin does nothing and the dizziness does not subside I will stop the Gabapentin as well. I did also start Provigil today and so far so good. No crazy headache or heart palpitations like when I was on Nuvigil. Seems like it may even be better than Ritalin which seems to have stopped working. But yeah, I feel more motivated today despite how crappy I feel. That is how I am able to sit here and write instead of lying around being useless! So we will see how it treats me over the week! Fingers crossed!

Yesterday I felt horrible, both symptomatically and mentally. So I called my neurologist’s office and got to speak with one of the nurses I really like and who has greatly helped me in the past. Turns out it was her last day as she had got a new job elsewhere. Sad for me but good for her! Anyways, since it was her last day she really wanted to help me out. She got me an appointment with my neurologist on Monday so I can talk to him about a few things before my next appointment and infusion. It is too soon for more Acthar so I want to see what he thinks I should do as my disease is obviously really active and I don’t know how to slow it down let alone halt it. I am afraid to think about how bad I may be in a week or two! Last time I saw him he told me to start looking into Lemtrada, as that will be the next step. I’ll talk about the pros and cons of Lemtrada later but yes, much like when I was considering Tysabri, I was a little freaked out but then I hit a point where I thought “I’ll take the risk because I don’t want to live like this”. Well I have hit that point again. So I really want to talk about switching to Lemtrada. I figure things don’t change unless we change them. I have to do something. If he thinks I should switch I will most likely not do this next Tysabri as I need to let it was out of my system for about 4 weeks and then I will start Lemtrada, hopefully avoiding any further rebound effects. Also scary but again, I am tired of this, I can’t stay on Tysabri forever and something has to change. There are hardly any benefits in life without risk.

So I think I will leave it at that for now. Hopefully I can stay motivated enough (with Provigil) to write on a regular basis. I’ll try to keep everyone posted. Take care!