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.


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