Thursday, July 2, 2015
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
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
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
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!
Thursday, June 4, 2015
Wow I have just been so depressed lately, I feel horrible, I can’t see straight and other symptoms of mine are getting worse. So I have mentioned before that I have a huge lesion in my cerebellum, which explains my balance issues and my oscillopsia/Nystagmus (and a few other things but those are what are making life feel like hell). For a while my balance sucked but I could still do that neurological test (forget the name) where you put your feet together, close your eyes and extend your arms out in front of you. If you start tipping you have a vestibular issue. The other day I noticed I could no longer do this. I would do the test and feel like I was upright but then the pressure of the floor would grow stronger at the side of my foot. I opened my eyes and hey, I am falling into the wall!
By the way, balance works thanks to 3 functions; vestibular (inner ear), proprioception (the feeling of where your limbs are in space and the pressure of objects on them to be overly simplistic) and visual (does the world look like it is oriented right or is it side ways?).
So this told me my vestibular system is working less well which tells me the lesion in my cerebellum is getting worse not better. The feeling in the side of my boot that hinted to my tipping to the side would be proprioceptive and then when I opened my eyes and saw that the world was not upright I knew I was falling. So you could say that 2/3 functions are working ok to keep me upright but really my vision is not so great so it is more like 1.5/3. That is totally not scientifically accurate but you get the idea. I am going to try to see a physical therapist my Mom worked with who specializes in vestibular function because I am not sure what to do. You see I don’t know if vestibular exercises will actually work much because my inner ears are fine, it’s actually the part of my brain that interprets the signals from my ears. So hopefully I can figure out what I can do soon. All I know is the worst thing I can do is NOTHING.
I saw my Neurologist the other day (6/2/15) and we talked about a lot. I told him that I am just beyond sick of this Nystagmus/Oscillopsia crap because it is the most debilitating symptom I have. It is miserable! I just want to see straight again! Driving would be nice so I could go to the gym and physical therapy AND get out of the house but if I could just get around and do simple things like cook that would make me pretty happy! I am loosing my mind! So I had been doing research on treating Nystagmus and I came across a page on Nystagmus and Saccadic Oscillations created by the University of IowaDepartment of Ophthalmology and Visual Sciences that listed a decent amount of treatments that could possibly help different forms of Nystagmus. I didn’t think most of this would do anything in my case but I am desperate and figure I can’t say “I have tried everything” until I really have. I went down the list and looked up any kind of abstract related to the treatments I could. First was Clonazepam which I am already on for Myoclonus; I followed the protocol used in the abstract and… nothing. I asked my Neurologist for Baclofen since that was on the list. He wrote me a scrip, I have been on it for 3 days (10mg 3X a day) and… nothing. Next I will ask for Gabapentin which upon doing more research a lot of people say helps a lot where Baclofen didn’t. In the mean time I tried another substance on the list which I really could not believe; alcohol. As in, alcoholic beverages! I read through Nystagmus forums and almost everyone with both acquired and congenital Nystagmus said just one glass of wine or a beer seems to relax their brain an greatly improve their Nystagmus! I was extremely skeptical but again, I can’t say I tried everything until I have tried everything! So I picked up some wine; 1 glass, nothing. 2 glasses, nothing. So I drank about half the bottle and… nothing. Cross that off the list.
They also listed THC, something I plan on trying while I am in Colorado next month to see what it does (if anything) for my MS because I am desperate (obviously). I just want some relief! I did forget to ask about trying another round of Acthar if it is not too soon. Maybe the first round didn’t clear up my symptoms because it was too busy calming the disease activity down? I have no idea but the longer this lesion is there the more likely I think it will/has become a permanent symptom and I really do not want this to be my new baseline… It’s been hard to get up in the morning because I honestly have little to look forward to besides making it to the end of the day so I can go back to sleep where I am usually “normal” in my dreams. I know that is depression talking but it’s how I have felt. I am really trying hard to snap out of it… But depression is difficult; when the alcohol was not helping it was really easy to pour “one more glass” and I may have taken some medication at the same time so I was kind of messed up.
Alcohol doesn’t seem to really hit me alone. I give the example of gunpowder. Gunpowder is made of 3 things; charcoal, sulfur and potassium nitrate. Put a lit match to these 3 things alone and nothing happens. Mix them together and you get an explosion when you put a match to it. Alcohol alone doesn’t seem to affect me. The other 2 medications alone don’t really do anything. Mix them together? Well let’s just say I have never really felt like that before. I am not mentioning the meds I took because obviously I do not condone such a thing. People tend to do stupid things when they are depressed and that was really stupid of me. I never really drink as it is but yesterday, I think I just wanted to feel like something I did would actually affect me because right now it seems like no matter what I try nothing seems to happen. Funny though, it is a lot easier to make something negative happen than something positive… Well, always something to learn and now I know. Play with fireworks and you can blow a hand off. Now I pretty much have a short list of medications to try alongside hope.
On a more positive note, tomorrow is my birthday; I’ll be 25. Actually I personally don’t consider it a positive note. I am 25, big deal, look up “Patton Oswald Birthdays” on Youtube and that is pretty close to my birthday sentiment. I would just post the video here but there is a lot of bad language, so consider yourself warned. As Dr. House said though, “I don’t really see the point in celebrating the fact that I was alive long enough for the earth to circle the sun one more time” or something like that, I forget. I am sure it would be different if I had lots of friends to hang out with or a girlfriend but yeah. As of now, I really do not care, it is just another day to me. Once you hit a certain age there is not much to celebrate in my opinion. 13, 16, 18, 21. Those seem to be the big ones and then it’s 30, 40, 50, 60, etc and no one ever seems to be overjoyed with those days. I seem to have developed a really pessimistic sentiment about birthdays and I am avoiding saying a lot of what I am thinking so maybe I should just stop haha?
Thanks for reading, wish me luck on getting out of this depression funk I have been stuck in!