About Matt

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Tuesday, September 1, 2015

The Lemtrada Nightmare; Round of Steroids

This is one of those times where I really wish I had a blogging routine down because now instead of trying to write a decent length of a post about a little news I have to try to not write too long of a post about a ton of news. So where to start…

Well, my last post was about my level of fatigue and how I thought it might have improved due to my taking of cannabis oil. A small amount (5mg of CBD and 3mg of THC) but it showed immediate and impressive results. I have been looking for an actual oil with a high concentrating of CBD and a low concentration of THC and so far? Not much luck… Everyone in my town just wants to get high so it is really hard to find what I am looking for because it is totally medicinal and CBD causes no “high”. I tried one oil which I have come to determine is mostly THC and not CBD. When I opened the packaging there was no label… oops. So that one is good for sleep and urinary urgency. Then I got another product that is a much thinner type of oil for under the tongue. It was about 1mg of CBD and 0.5mg of THC per dropper, which I could fit in about one pill. I am not sure if ingesting the oil instead of letting it soak under the tongue mitigated it’s efficacy but it really did not taste well plus, I want to be on at least 50mg not 1mg… So obviously that is just too much and would basically require me to drink like a whole cup or take 50 pills a day. So I don’t think I will be able to call this one till I get ahold of the nasty black oil I am looking for which is probably really expensive because it is so concentrated and I have a feeling I am really going to have to drive out of town to find someone who sells it so that will have to come later when I have the cash and can drive around. So not too sure it helped but who knows.

 Now, moving on, the update on my healthcare situation here… This relapse (or what ever you want to call it) really started in February and ever since then it has been one hell of a battle to make the switch to Lemtrada. First I had to wait 6 weeks for the Tysabri to wash out of my system. Then it was “oh yeah, you need the Zoster vaccination) so it took about a week to get in for that and then I had to wait 6 more weeks for that to wash up. At the beginning of that 6 week period of time I was told I should get a call to schedule my infusion date in about 2 weeks, awesome! It’s so close! Or so I thought. I called in 2 weeks since I had not been called and no one even saw an order in the system stating that I need an appointment. This is when my typically long lasting patience ran out. I can’t see, the world is spinning, I feel nauseous and I was getting so week it was getting hard to walk! I am calling and calling and calling and just being the squeakiest wheel I could be. I end up getting nowhere and the 6 weeks is up and I had an appointment with my neurologist, which is when I expected to go over last minute details regarding Lemtrada. Instead I got to voice how unwell I felt and how unhappy I was with this situation. He was unhappy as well and said he has been having issues with these ladies “upstairs” just dropping the ball lately. He started making “angry phone calls” and assure me he thought he could get me in by the following week. “Call at 5 and we should have an appointment set”. I call at 5 and talk to the main nurse who I really do not trust. Now all of a sudden it’s “I don’t know how long this can take so don’t ask me but it could be at least a month before I can order anything including blood work you have to do”… wait… why are we doing this just now? We had all this time I could have done it!

So I said forget it. I want Solu-medrol by the following week. It too all sorts of nagging, all day on hold, emails, and I even went down there to talk to someone face to face. I could actually feel that something was going on in my body, like a fire that is now out of control. If we continued to do nothing I knew it would do so much damage that might not all even be reversible. I was able to get squeezed in and I started yesterday my round of Solu-medrol. I am doing it down in radiology in their little corner but you know what? I really do not care, I would be just as happy to get it done in a broom closet after this long of feeling so horrible!

I know everyone is different and when I was first diagnosed with MS all I wanted to know was how long a relapse lasted? A flare? How long till the steroids started working? I know these questions to pretty much be unanswerable because everyone is different but no I find that I am once again asking myself “how long until this is over?” so I am hoping to see some results in roughly 2 weeks but who knows, it could be 2 months? I have no clue, I am just happy to have started. It has been one hell of a year and I feel like I completely lost all this time. I achieve absolutely nothing in my life this year, it is like 2015 never happened! I just want this to be over so I can start rebuilding again. I wonder if I will ever have at least a 5 year period of life where thins are stable and I am in control and self sustained? I feel like all I do is pick up pieces! Blah…

My friend, his girl friend and her son are visiting from Colorado all of October. I just really want to be able to get around by then. Even if I can’t drive, I would be happy to be able to walk around and maybe even go out a bit. I feel like I have had no social life this year, no one to even sit down and talk to, so I have really been looking forward to this.

Even more short term than that though is my goal to simply get my vision and balance back. At this point I am not even really going down stairs, it is just too difficult and feels so unsafe! The stairs are moving, they look so steep, my balance is a joke and my legs feel so week trying to climb the stairs! I was lying on the couch staring at the ceiling, my head stationary on the backing, even still I could see everything shaking. When I move around it feels like I am looking through a camera whose lens is not focusing properly and it takes a lot of concentration to get my “auto-focus” working. Take one hand and hold it about 1 foot away from your face. Stare at it. Now look at something across the room. See how your hand is no longer in focus? Sometimes that is how everything looks and feels and I have to really try to get it to focus all the way. I think when my vision feels more stable I am going to have to go back to the optometrist and see about a new prescription; it will be out of pocket, that sucks, but my vision has always been precious to me and after this year? I am really going to try to invest more in my eyes.

Lastly, the vision and balance are my main symptoms. My fatigue and insomnia have not been so bad since I started taking cannabis oil. I had also been feeling really tight all over. Somewhat spastic but just all over body tightness (even in my stomach). That does not seem to be an issue today so maybe the steroids are doing something? Probably just a coincidence but who knows? Worst is my cognitive function; my memory is the worst it has ever been and my problem soling skills just suck. I hate not feeling like me in my head so I have just been trying to not think of it but I have to start some sort of brain training routine to try to kick start my brain again or at least keep it from getting worse. I am sure I have been experiencing more symptoms than just this but I honestly just can’t locate that information in my brain so if it pops up I will be sure to share. Wish me luck on the steroids!

Oh yeah, just out of curiosity, about how long would you say that it takes for you personally to start feeling the effects of steroids - Solu-medrol (1,000mg of IV Methylprednisolone). Share below!

Friday, August 14, 2015

Feeling Way Less Fatigued; CBD??

Something interesting. I have not been feeling as fatigued. I mean I still feel tired but I am waking up before my alarm and am too awake to try to sleep in. I also can not nap. I lie down but I feel the need to get right back up. I have been getting a lot more done wether around the house or writing. It has been nice.

Now I have been trying to figure out what has changed and the only thing I can think of is that I am taking the cannabis oil/CBD pills. Other than that the only thing that has changed is it is getting really hot but that should be making me feel more fatigued... I don't want to jump to conclusions but I really just can not think of any other factor that could be helping here...

No naps, less sleep at night (because I seem to need less), waking up feeling ready to get up before my alarm and getting more done; Provigil and Nuvigil never did this for me. I actually decided to take Provigil yesterday to see if it would do anything different since I seem to be feeling less fatigue. Not really but usually after about 5 hours after taking Provigil I crash really hard like I drank a bunch of coffee or something. I did start to feel the crash but when I tried lying down I just had to get back up and do something. That is very unusual for me.

So what ever the cause may be I am just happy to be getting more done. I do however, think that it has something to do with the CBD pills I have been taking because what are the odds that I would spontaneously have less fatigue after years of this crap the day I start taking CBD oil? Who knows. I just hope it lasts.

Tuesday, August 11, 2015

Trying Something New; CBD Oil

While I am waiting for Lemtrada I still find myself falling apart. My vision/dizziness/vertigo/oscillopsia or what ever you want to call this is drastically worse. Getting through the day is miserable and as soon as I wake up I am already thinking about going to bed again where I can have a few hours of MS free dreams.

Since I am getting worse and can’t seem to at the least stay “neutral” I decided to try something I was going to wait to try till after I started Lemtrada because if I got better I wanted to know what was causing it and if I tried something so soon before Lemtrada I might not be able to tell what was working but at this point I don’t care; I just want to feel better and be functional! So obviously I have been trying marijuana but what I really wanted to try was cannabis oil. No high because there is no THC, just CBD which is an anti-inflammatory and an anti-oxidant substance.

When you hear about cancer patients curing their cancer with marijuana this is what they are talking about. A nasty black oil in a syringe that you have to ingest either in food, under the tongue or in a capsule. I am sure there are other ways but those seem to be the usual methods. So I actually could not afford that just yet so I went for another product that comes in a pill form with the oil in it. One of the main difference is it has a tiny bit of THC in it (not enough to make you high) and it has a limited dose per pill (5mg of CBD and 3mg of THC). So I bought that last night.

I feel like I am just taking a fish oil supplement. I mean it is very similar to that or a vitamin D gel casual in shape and appearance. No weird taste, just a simple pill. So far so good. I took it before bed in case it made me drowsy and because other forms of cannabis I have tried really seems to help or eliminate the whole overactive bladder thing (that wakes me up at 3am in a panic to make it to the restroom in time) I decided to drink a bunch of water right before bed. About a bottle an a half (I was really thirsty). Normally I try not to drink anything 2 hours before I plan on going to sleep and if I even dink enough to swallow a pill I usually wake up in dire need of using the restroom. So a bottle and a half of water? This was just a time bomb right?

Well I woke up at 3am on the dot and did in fact have to use the restroom but it did not feel as “urgent” as usual. I don’t know how to explain it… I could tell my bladder was full but I did not have that “oh my God, I don’t think I can make it to the restroom fast enough” feeling I usually get at night. Then I lied back down but I could not fall asleep. I was wide-awake. Some forms of cannabis help fatigue (yeah I don’t get it) so maybe that was the problem? I then realized I was really hungry but what ever, I will eat in the morning. 20 minutes later I am still wide-awake and getting even hungrier. I never have an apatite like this! I usually have dinner and then the next day a cup of coffee for breakfast and then I eat lunch. I have (for some odd reason haha) always had a problem with putting on weight. Finally I could not take it! I can’t remember the last time I felt so hungry! So I stumbled downstairs at nearly 4 in the morning and started eating what ever I could. Keep in mind that right now I really try to not use the stairs during the day because I worry I will trip and fall. Afterwards I went back to my room and watched TV until I eventually fell asleep.

So today I decided I would take it in the morning to see how I feel throughout the day in case it gives me energy and makes me hungry because that is better to “deal with” during the day than at 3am. Even if it does nothing to reduce the inflammation causing my visual symptoms it is still worth taking because I have never come across any pharmaceutical pill that takes care of more than one symptom! Usually they will take the edge off one single symptom and cause side effects but this has no side effects and doesn’t just take the edge off but completely resolves a symptom! I wish I had tried this years ago because there is a really good chance I would be so much better off today, not dealing with what I have been fighting all year and probably still be in Colorado with a job and apartment. Now I know.

So the next goal is to get that extract oil since I could easily take200mg instead of 5mg of CDB; imagine what that would do! I have no clue… I really am amazed because I went into this a total skeptic and so little is doing so much! And all I need to do is save up about $60… that is it… $60… So I will keep everyone posted as the days go on! And yeah, I am sure I sound way too excited but when you have been dealing with symptoms for so long and tried so many medications that do nothing it is exciting when for once they are just gone. It was only one night so who knows, maybe last night the universe just felt like giving me a small break and the pill was just a coincidence? I don’t think so but that is why I have to see how I feel after a week or tow of taking this. It’s not science if it isn’t repeatable right?

Thursday, August 6, 2015

Lemtrada Coming Up - So Fatigued...

First of all I am sorry that I just have not been doing much writing, I have not been feeling great and you would think writing would be easy with fatigue but I can’t even think! So this will be short.

Tuesday marked the 3-week mark meaning I only have 3 weeks till I can do Lemtrada (since you have to wait 6 weeks after the Zoster vaccination to do Lemtrada). I don’t have an exact date set for my infusion just yet but I am guessing it will be the week of the 31st so I can have a full work weak to get Lemtrada (5 days).

I have been so fatigued lately, more so than I have ever been. I decided to play with Provigil some more; I am taking it every day for a week to see what happens since I never gave it more than 2 days. So far I am not entirely sure. There seems to be a “crash” regardless of whether or not it gives me any sort of boost. I think, at the most, I feel like I drank 3 cups of coffee at once. So at the least it is a lot easier to swallow one pill than drink 3 cups of coffee haha…

Something else I am noticing is my legs are getting weaker. Maybe that is because I am sitting at the computer all day? I really only notice it when I walk up the stairs. For that moment in-between steps when I am on one leg it feels like I am going to collapse. I know I need to work that muscle out but I am just so tired! So we will see, I am trying to work some stuff out because I wanted to do as much as I could before Lemtrada so I have a better baseline to improve from. Unfortunately it feels like I am still slowly declining; vision, balance, strength, cognitive function, etc.

Also, I saw that neuro-ophthalmologist again the other day. Waste of time if you ask me. All he did was spit out condescending remarks about optometrist who did the same test he wants to do (but obviously can not do them as well as he can) and how they are not a part of my medical team because they are doing nothing to treat my problem. I find that interesting because what is he going to do? Nothing… because there is nothing he can do. I bit my tongue and said nothing because I am not sure if he is a close colleague to my neurologist and also because I don’t have the energy to even try to care enough to argue. Oh yeah, also, every time I had a question about oscillopsia he would interrupt me to explain that oscillopsia has nothing to do with the eyes but instead the cerebellum as if I didn’t already know that and I didn’t hear him say that the first 5 times. Ugh… Egos…

Another random event; I was so nauseous yesterday. Nothing I took helped until I ate some cannabis. Wow that worked amazing. Nausea was 100% gone; no wonder people on chemo use it! I did take note of a couple things I noticed while on it that I never really noticed before because I usually just go to sleep right away. I noticed with my memory that if (let’s say) I was watching a movie I could only remember the scene I am in but I can’t remember how I got there? What was the previous scene? Then when I move on to the next scene I forget about the one scene prior that I could previously remember. It’s like my short-term memory space was even shorter than usual! I also noticed a feeling of pins and needles in my hands but not the bad kind. It tickled. So when I lied down I just focused on that feeling and it just knocked me out.

I am trying to work on a video right now to get ready to document my experience on Lemtrada but it is not going well. After about a sentence or two I loose my train of thought. So in the meantime be sure to click on the multiplesclerosis.net link up top to read my latest articles!

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…