Saw Dr. Bailey Speak, Copaxone, Tysabri, MS Patients

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Last
night I visited the Old Spaghetti Factory in Rancho Cucamonga
California to watch Dr. Ronald Bailey speak on Multiple Sclerosis for
Shared Solutions (Copaxone). There was a good amount of people there
including a friend of mine with MS that I know through Facebook. It
was nice to finally meet her in person! I didn’t really get to talk
with anyone else, there were little minglers afterwards, plus I was
trying to listen to the speech over all the noise. It was very hard
for me to concentrate as I seem to have developed a bit of a
sensitivity to noise.

Dr.
Bailey spoke on many different aspects of MS, honestly, very little
about Copaxone, so I did not feel like he was trying to sell a drug
as much as he was simply trying to share knowledge. For those of you
who do not know, Dr. Bailey is my new neurologist and the first
neurologist whom I respect not only as a doctor but a person. Never
have I walked into a room to meet someone who I feel without a shadow
of a doubt knows volumes more about MS than I do. Finally! Its like
order has been restored to the universe! Doctors SHOULD be smarter
than patients but too often it’s the other way around.
Anyways,
he said what I have always said. “knowledge is power”. Unlike
previous doctors who have said “Don’t do your own research, it will
just stress you out”, he actually encouraged us all to learn.
Knowledge does not seem to scare him like it does other neurologists,
most likely because he is not insecure about his knowledge, he is not
worried a patient will out smart him. I have walked into many rooms
and proven myself to be more knowledgeable than many neurologist, but
never will I know HALF as much as this guy, So I respect him. This is
not the guy who studied to pass a test and then loose the knowledge,
this is the guy who studied because he just wanted to know.
So,
on a different note, it did feel odd to see so many other people
going through the same thing as I am. It’s way different than talking
with people online because where it’s one thing to listen to someone
talk about cognitive issues, it’s another to watch and listen to
someone else struggle to find the right words. Then too see all the
different people using canes and wheel chairs, the visual experience
was just so different, so new to me. Online we can choose how people
see us and with MS it is so easy to hide our disabilities as a lot of
them are “invisible”. But when you see us in person, you can tell
something is not right, you can see that I don’t walk well, but in a
picture, I look A-OK. I would definitely like to go to more of these
events.
Oh
yeah, lets jump back to Dr. Bailey. You know, there are many doctors
I have seen over and over again in the hospital who have to look at
my chart to remember my name. I have seen Dr. Bailey twice and both
times I had a hat on. This time, I sat in the very back corner and I
actually did my hair. He asked a question and I spoke up, then he
mentioned my name to everyone, I was surprised that he knew who I
was! I spoke with him afterwards and he asked how I was doing, what
problems was I having. I never know what to say because I am not used
to people asking that (especially doctors who MEAN IT) and expecting
a genuine answer. I have really bad cognitive issues so if I do not
write it down I usually do not remember it, it’s like living in a
giant empty space, so he caught me off guard. What’s wrong? I
honestly do not know. I had to think about it and after a few seconds
I remembered a few concerns but honestly, if you asked me what
symptoms I had I could only name a few as most of them just feel
normal now…
He
did mention a few things about Tysabri that I need to look into. And
did you know in the early 90’s Copaxone was actually an oral
medication? Gilenya was not the first oral medication for MS, many
people think that, but I guess it was Copaxone, the delivery method
just did not work as well as an injection. Think about it, you have
to digest a pill… Thats why I felt Solu-Medrol always worked better
than hi doses of oral Prednisone. Maybe I am wrong but I was pretty
close with my theory there. Either way, I look forward to Tysabri and
it sounds like the ACTH still has some kicking in to do. I was not
sure if it was like Solu-Medrol and would only work at it’s best
after the first week or so. So I am glad that I will still most
likely see some progress, I can live with slow, and I am starting to
feel a bit better which makes me only more patient.
Better
is better and knowledge is Power.

2 Responses to Saw Dr. Bailey Speak, Copaxone, Tysabri, MS Patients

  1. Anonymous says:

    he sounds like a great doctor. I left my old doctor who told me above all else, not to look on the internet. She however, refused to tell me anything about the different DMDs. Really now. As in Shut up and trust me, I'm a doctor? No way.

    Teva do a great service with their dinners.

    Congratulations.

  2. Matt Allen G says:

    wow. You are the SECOND person I have heard that from, about your doctor telling you to not look online, pft. That makes me so mad, we have this for life, education should be mandatory, I mean I read neurology books, will never stop! But Thanks haha!

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