I Saw Dr. Bailey, Tysabri for Matt?


Well first of all I should
start by saying my cognitive function is horrible right now, it’s
been falling apart slowly for the last month or two but now it’s
definitely hit a point that I think it’s time to admit, I can’t think
the same. I can’t express myself and it’s horrible. It’s taking 100%
of my effort just to write this, I am forcing myself… I am noticing
I can’t do simple math, I am mixing up simple words, I am forgetting
everything, things that I know I know I do not seem to know anymore,
it’s like everything is on the tip of my tongue. With that said let’s
see if I can make myself write a decent amount of material.
I finally saw Dr.
Bailey in Riverside yesterday and I did my best to not get my hopes
up but man did he blow my expectations! I can’t remember the last
time I was so happy, kind of sad, sad that at 22 years old I am this happy
about something others my age might look at as unimportant.
So at first he asked me to
go over all my problems. I briefly went over all of my symptoms and
my history with the disease.
“OK. What else?”
“Well, that’s pretty
much it, I am not used to getting to talk for more than 30 seconds,
so I summed it up the best I could”.
Had I known that he wanted
to talk in such depth, and spend more than 4 min. with me, I am sure
I could come in with a lot more questions but I honestly was not
expecting someone to actually pay attention to me. He listened to me,
he comprehended me, I am not used to that, in the two years that I
have had multiple sclerosis I have never experienced that. When he
started asking me questions and assessing me I had a hard time not
grinning like an idiot.
He started thinking out
loud and I immediately knew that this guy knew what he was talking
about when it came to multiple sclerosis. This was the first time
that I have bumped into anyone that I felt without a shadow of a
knew more about multiple sclerosis than I do. He was going so
fast, talking about all my symptoms, where he thought the lesions
were, what nerves were being affected, etc., etc. it was awesome.
Plain and simple.
He checked my reflexes and
then moved on to my vision. He was quick to identify that it was sixth
nerve palsy, something I decided I had but other doctors were quick
to dismiss. It didn’t take me long to figure out that he wasn’t
checking my reflexes because that was the textbook first step, but
because he was really processing the information that my reflexes
were giving him. He watched me walk a little bit and we did some
talking about various things including medication. He said that I was
a prime candidate for Tysabri which I have been asking for. He gave
me Nuvigile to treat fatigue and also something to help me sleep but
only when I need it. I could tell that he was trying to give me
something that works, he didn’t just leave the room with some
pharmaceutical dude that told him “you need to sell 50 bottles of
this if you want your vacation”. I have not picked up my
prescriptions yet so I don’t know how any of it works but I am
confident that it will as he was not sure why Dr. Sagert gave me
Amantadine, he says it doesn’t work, and it doesn’t. He also gave me
ACTH which is an alternative to steroids for treating acute
exacerbations in multiple sclerosis. I’m very excited to try this, I
hope it comes soon and that it really clears up some of my symptoms
since the last few steroid treatments did not seem to do much.
We next walked into the
other room to review my MRIs, something no one has ever done. He
popped the disc in and we sat there and waited for it to load. Just
after skimming through it for a few seconds he pointed out things
that were not even in the report, things that no one has ever told
me. On top of the many lesions I never saw, he pointed out a handful
of black holes that I didn’t know about… I didn’t know I had any
yet he pointed out 15 just after a few seconds of looking at my MRIs.
He said that I have definitely had MS for a lot longer than two
Oh yeah, on top of the
medication he is giving me, he gave me the number to a personal trainer
at a gym who also has MS. He believes that exercise is very important
which is something that other doctors don’t seem to think has any
benefit. No benefit to their wallets that is… He wants me working out about three times a week and going
to a pool as much as possible. Between all of this he seems to think
that I should have no problem working from a six all away down to a
two on the disability scale for multiple sclerosis. I would be happy
with a four, two would be a dream! 
I cannot express how happy
I felt at this point! He was talking to me about specific symptoms,
helping me with medication, he was big into exercise, he was trying
to improve the quality of my life! He was not just telling me “this
is the course the disease, deal with it”. I cannot wait to call Dr.
Sagert and tell her thank you, thank you for referring me to a real
neurologist, a real MS specialist. I think I have finally found my
doctor, this is the first neurologist that I trust, he already set me
up with an appointment in one month, not four. I also plan to see him
speak in October in Rancho Cucamonga so I can’t wait!
Man, a 2.0… At a 2.0 I
would walk or run every morning, I would go on hikes again, I would
start playing piano again, I would do great in school, I would finish
my novel, my multiple sclerosis book, hopefully start my speaking
career, so much! I would do so much! I’m so sick of sitting around
the house doing nothing, being disabled, I hate it!
I think that a new chapter
is about to start in my life. I am excited! Oh, I should mention, my
vision is still severely doubled. I have tape over my glasses
covering my right eye because that is the eye that I noticed will not
move to the right. I have slowly been uncovering the lens a little
bit at a time so that I can see out of the left side. At first it was
just a sliver but now it is much more open. I still can’t look out to
the right or else everything doubles (unless I cover part of my right
eye) so I guess technically it’s getting better but I’m still not
where I want to be. I have been listening to an audio book that I’ve
been trying to finish for a long time, was working on it last year
actually, but I got distracted by my health this year. I am just about
done but need to get a new audio book, kind of sad about that, will
have to look for something cheap because the public domain stuff is
hard to get lost in, most the readers are fairly monotone.
Was having trouble
sleeping for a while but I think that was the Amantadine because
since I stopped it I seem to be sleeping much better though I do wake
up a couple of times due to bladder issues, fun… I am going to
finish this off with a list of symptoms I have been experiencing
along with the medication and supplements I am currently taking. Took me
a while but I finished, wrote a lot more than I thought it could!
Funny, since I have been listening to this audio book I have been wanting to
start working on my novel again but after this blog post, I am tired,
so that’s going to have to wait for another day. I will talk to you
guys later!

5 thoughts on “I Saw Dr. Bailey, Tysabri for Matt?

  • October 3, 2012 at 2:38 am

    So happy to hear you have found the "right" Dr.
    Things are starting to look brighter for you.
    Hang in there!

  • October 4, 2012 at 3:12 am

    Good on you Matt, if only you'd found this neuro first!
    I'm glad you life is getting back on track, you deserve it!

  • October 4, 2012 at 3:16 pm

    Haha thanks. I didn't/don't like the suffering BUT, I did learn a lot, so in retrospect, I am glad it happened, IN RETROSPECT lol! Will be even more glad for it to end, I learned enough! Thanks gals!


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