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!

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