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.

11 Responses to My Symptoms, Medication and What is Going On

  1. debchristie says:

    I think you are using very good reasoning.Now this is hard for me to explain but,I looked at your facebook and I noticed you had been on it a good amount discussing issues of love of mankind.I thought then that you were possibly on the brink of an improvement and I worried that you might over do things and make yourself tired.Your writing is so good people love to read your stuff .Some day in the future , you should write about history.In the beginning of this post ,you talk about your vision leveling off and getting around ok.Then it went bad again.That's how it goes before an improvement.I would see an improvement and not be able to maintain it and then in small increments there would be a lasting improvement.I use a rule for myself no more than 60 minutes of activity .AFTER 60 minutes ,rest whether I need to or not.Since your in a transition period .It might be more like 30 minutes on 30 minutes rest.My brother in law got thyriod cancer and he just takes meds for it.He's fine .Science can take a lot of fear away and love can endure . Good luck ,I think things will go well .Can you consider a fund raiser for some of these bills.

  2. Wow I just had crazy Deja Vi haha.

    I hope that things improve but I sort of think they won't until I start Lemtrada with all the steroids but who knows. I try to rest often, I can feel it when I need it which may be a tad too late. Science/knowledge DOES kill fear because how can we fear the unknown if we KNOW? I would only do a fundraiser for medical bills which there are a lot but I am not sure if I am ready to do that just yet.

  3. Matt, I'm so sorry that you have to anticipate ignorant, arrogant people visiting your blog with an axe to grind, but of course I'm not surprised.

    Thank you for sharing this. I'm sure it's difficult to explain such a complicated illness in a way that people unfamiliar with its complexities can understand. You're going through so much and I feel for you. Sending you warmth.

  4. It's just part of blogging, you can't be a blogger if you care about criticism haha. Thanks though,

  5. Hi Matt. Sorry you're having such a hard time. I've been reading your blog for a little while now after finding you while researching these strange neurological symptoms I have. I live in New Zealand and have had to wait three months for a neuro appointment as we have a free hospital system here and I can't afford to pay for private healthcare. My vision problems are no where near as bad as yours. I'm short sighted normally but my vision changes all the time and I often work in front of my computer at work without my glasses as I can see better with them off. While typing this my left eye became painful and then my right eye started to twitch. I'm currently in limbo as I now have to wait for an MRI scan and a nerve conduction study. I guess my problems are small compared to yours. Hopefully your new medication gives you some improvement. Take care.

    • The one thing I have learned is you can't compare your symptoms to other people's. It's new to you and a paper cut is nothing to most of us but a newborn who has never felt anything worse might think it is the worst pain ever. It's all relevant.

    • I hadn't thought about it like that. I'm still lucky to be able to work although sometimes the spasms and fatigue have kept me home. My GP finally admitted they are trying to rule out that I have MS which we knew any way despite the doctors keeping quiet. Hopefully the MRI will shed some light. Wishing you improved health with your new treatment. The cold weather here has given me some improved days lately.

    • Hopefully you get an answer soon! Thanks!

  6. Not stupid.They use Lemtrada for HSCT patients…plus they have cancer treatment ……to make tgis work.

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