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If everybody's ready I'm gonna go ahead and get started I don't know if everybody's
here yet but
I'm it is a little after 6 so I guess we should get moving
so I want to thank everybody for coming to the talk
Um, I am Christina Johnston I'm a
neurologist that work that works at Lakeshore Health Partners on
I've been the in town practicing for the past year so
I've sort of met quite a few
patients with MS in my first year of practice and
I was asked to do a talk to the community about a common problem that
I've seen so far and MS was like the first thing that popped into my head I
thought
um, there would probably be some questions and things that
um, there's been some new medications that have come out over the past few
years so I thought it would be
a reasonable thing to review just kind of do an overview of what is MS
uh what are the symptoms of MS, how do we diagnose MS
and then some of the newer therapies that have come out over the past few
years I wanted to kind of
touch base on those and then will be plenty of time for questions at the and
I
didn't get really really specific about a lot of things cause I knew there was going
to be probably a lot a questions so
um but we'll have plenty of time for that at the end okay
also I wanna apologize ahead of time I have a cough drop in my mouth cause I'm getting over
bronchitis
so I apologize in advance um
okay so I have nothing to disclose I'm
independently employed I don't work for anybody else except for LHP so
just want to get that out of the way
ahead of time so what is MS
what happens with MS? Um MS is a
chronic disease in the that affects the central nervous system
that means that the brain the spinal cord and also the optic nerves which are
the nerves that project to the eye and
allow us to see can be involved in this process
Um, everyone has an immune system that normally fights of diseases such as
bacteria and viruses
any sort of infection and we think that
the reason MS occurs is because there's a sort of case of mistaken
identity that the immune system
mistakes the central nervous system as
a foreign object or foreign being and it unfortunately attacks it
and creates a problem so statistically speaking everybody likes to talk about
statistics a little bit to get a general idea
of how big of a problem this the is in terms of
our country um it affects approximately the statistics vary a little bit but
around 350 to 500 thousand so
um people in just the United States alone worldwide there's over two
and a half million individuals
and the estimate that in in the United States alone approximately 200 people
per week are diagnosed with this disease so it is
rather common um more so than a lot of neurologic diseases and its probably
affected a lot of
I means I'm sure a lot of people up here in this room are affected but
even in the general community most of us can say that we know someone or
or know of someone that has or um
a family member who is affected by MS or a friend or something it's very very
commonly seen. Um, it typically affects males
less than females I we don't really know understand why that is but the ratio is
about two to three females to one
male um but that's kinda what we see
typically caucasians are affected more predominantly
um than African-Americans although caucasians african-americans and
Hispanics
are the most commonly affected we don't always see it as much in asians although
it can occur
and there's a few other ethnicities this is not as common
um children can be affected by this disease although it's very rare
in my training I did see I a few children that were affected but mostly
it occurs in our
younger years it kind of the the saying is that it affects a person when they're
in the prime of their life their twenties or thirties or forties or
fifties
when they're really you know doing great they're living their life they're having
children they're getting married
and this happened so
it tends to occur kind of in the northern areas of the world
the United States predominately in the United States it's even
more in the upper portions of the country as you get more South
it doesn't seem to be as prevalent and that's the case across the world so
europe
Japan some of those areas are more often effected
northern European countries specifically
tend to have a higher predominance of MS as well
we're not really sure what that is there some theories about that
vitamin D or sunlight exposure could be playing a role in why that
occurs more commonly than nearer to the equator because
it's very infrequently seen in the countries that are closer to the equator
The life span a person with MS is
generally about on the average only a few years shorter than
the normal life span of a typical American so
you know people who are diagnosed with MS still live a full life only
they have to sort of um deal with the symptoms and the chronicity of this
disease
so we still haven't identified exactly what the cause of the disease is
but there's a lotta research so
I just put this slide in because this is I found this on-line and
it's a picture above many famous faces
who have been affected by MS
I think that's Teri Garr
Annette Funicello who just passed away she was seventy years old so she
lived a long time with MS Richard Pryor
Ann Romney was in the news with the last election kinda brought a lot of
attention toward MS
and raised a lot of questions about it Meredith Vieira's husband
I think Richard Cohen is his name he's um
a famous individual who's been in the news a lot about you know what
attention toward MS and Jack Osbourne was diagnosed a few years ago
so he's been in a few
newspapers and magazines over the past year so that i've seen
so but it is it does affect
anybody so
so getting into a little bit more detail about specifically what is it
so everyone's brain and spinal cord are
you know consist of nerves and the nerves are lined by
a protective barrier called the myelin sheath so the analogy that we use is
that it's like an electrical cord with
a protective you know insulation
around the cord and that's the case with the nerve
so what happens is that the normal nervous system
connects the brain to the spinal cord to the nerves in the extremities
which connects with the muscle and allows us to do things like move walk
feel a sensation uh, visualize the world
so when the immune system attacks the
the myelin or the covering up the nerve it creates a disruption in the signal
transmission
and so the signals can't get from the brain to the leg or to whatever is affected and
it creates a problem so it usually
happens when inflamation occurs after the attck of the immune system
on the myelin so
what happens with that is an attack a clinical attack
a relapse a flare whatever term
you choose to use our or your neurologist uses to use
but that's what it is so it's a sudden onset of neurologic
sometimes meaning weakness numbness anything like that
that comes on and doesn't go away for at least 24 hours
for some people it lasts for you know 3-4 days for some people it lasts several weeks
and some people never I mean it can persist longer so
typically though that's not the case typically it's a short term
a few days a few weeks and then it gradually starts to improve
which is why I sort of people can have symptoms and then they get better and
they ignore it and they don't even know that they have
symptoms of MS. Oftentimes it happens to a 24-year-old 25-year-old you
know a young person
they get better and they don't think anything of it until something happens
later
so that's the classic pattern that we here of relapsing remitting
so a relapse followed by a remission meaning
healing and going on with normal activity
so the symptoms can come on later in life
usually in this in the setting up infection if we're stressed out if
we're tired
and it's the result of the sclerosis left on the brain or
the sclerosis just means a scar so after the brain
is attacked or there's a damage to the nerve
there's a scar that forms as it heals but that scar
doesn't have the same capacity that it had prior to
its damage so it can leave residual symptoms
going forward. Over the course of one's lifetime you can see a decline in
physical activity you can see a decline in cognitive ability
so there are some chronic components to this disease which is what
leads to the disability component
you know and and managing these chronic symptoms is you
know that's my job that's what the neurologist
sort of managers and and deals with on a routine basis
so I put an illustration in here and actually tried to
put into my slide but it didn't work so I'm gonna actually just go to the
YouTube website
it's not my video but I found it online and I thought it was a fantastic
illustration
of the pathology that just tried to explain
Multiple Sclerosis, MS is a disease that affects the central nervous system
the CNS which consists of the brain spinal cord
and optic nerves everything we do
whether it's taking a step, solving a problem or simply breathing
relies on the proper functioning of the CNS
to understand how MS may impact the CNS
we must explore the disease at the cellular level
in the brain millions of nerve cells called neurons continually send and
receive signals
each signal is a minute but necessary part of
intricate CNS orchestrations that culminate
in the actions sensations thoughts and emotions
the comprise the human experience
normally the path over which a nerve signal travels
is protected by a type of insulation called myelin sheath
this insulation is essential for nerve signals to reach their target
in MS the myelin sheath is eroded
and the underlying wire like nerve fiber is
also damaged. This leads to a breakdown in the ability of the nerve cells to
transmit signals
it is believed that the loss of myelin is the result of mistake in attacks by
immune cells
immune cells protect the body against foreign substances
such as bacteria and viruses but in MS
something goes awry immune cells infiltrate the brain
and spinal cord seek out the myelin
and attack as ongoing inflammation and tissue damage occurs
nerve signals are disrupted this causes unpredictable symptoms that can range
from
numbness or tingling to blindness and paralysis
these losses may be temporary or permanent
that was a really nice illustration of what I tried to explain but obviously I
can't
do the video as nicely that explained it but I thought that was a good
explanation sort of of what the physiology of MS is just so that you can
all understand
if you weren't aware already so
again why does it happen we don't really know there's a lot of
theories out there there's been a lot of investigations about what specifically
causes it because
for for like I said it affects us at a younger age so there's a theory that
it's gotta be viral
I mean we're all exposed to varying viruses throughout our lifetime
the one that's most commonly thrown out there is the Epstein Bar
virus which many of us were exposed to in childhood some of us were affected
and got mono from it some of us had no symptoms of it
and they think it could be contributing or have some
some role in making the immune system
go awry and creates this this disorder
as I stated earlier vitamin D has recently become a sort of big focus of
MS and especially in preventing relapses because we
we think that low vitamin D levels low sunlight exposure kinda that
northern latitude
thing that I talked about before that that has some implication in
in the relapse in and the and the incidence of
worsening disease so there's a lot of research going on in that and a lot of
physicians now are starting to monitor vitamin D levels
and if they're low which most people in Michigan have a low vitamin D level
we're starting to replace it and kind of get those level
up a little bit into a more therapeutic range because we think it'll help
genetics is also something that they're
looking into it can run in families
there's definitely a large number of
you know families that do have MS that runs in the family but they haven't
identified a specific genetic linkage
I mean I have a number of patients in my practice in my training I saw a lot of
people that
you know their parent was diagnosed or they had a sibling who had been
diagnosed with MS
so it it seems like it has some sort of genetic linkage but we just haven't
really identified it yet
so MS
is a broad diagnosis there are four types of MS.
the most common and the most significantly more common is the
relapsing-remitting multiple sclerosis
that affects about eighty-five percent of people who are affected by
MS it's clearly the most common
a much much less common is a primary progressive multiple sclerosis
I'm not going to spend a lot of time on that one or any of the others because
it just it's not as commonly seen but primary progressive multiple sclerosis
you don't really see the relapses the patients who are affected by that
they they get a symptom and they don't recover from it
so there continue anytime that they have a new attack on their system they just
continually decline but they don't have like an outward attack and then
recovery so it's a little bit different and we
think it might be a little bit the the physiology of it is obviously a
little different we haven't clearly identified that
either there are not as many there really aren't any therapies for that
type of MS either and relapsing remitting
Multiple Sclerosis does have a number of therapies so I wanted to really focus on
that type for this talk
secondary progressive multiple sclerosis is kinda something that you
see
later in life in the disease process after
you know you've had it for a number years you start to sort of not have
as many relapses or not as
often and and things just start to quiet down or they seem like they quiet down
but what we know about that is that in that stage the relapses become less
prominent but the disability part
seems to become more evident so the scarring on the brain that occurred
earlier in life
now starts to affect us more seriously
and then progressive relapsing multiple sclerosis is very
for a rare but it is a is a condition where
there's a progressive component that can have relapses but that you
know you
you have a relapse but you don't completely recover and it's more profound
than
in relapsing-remitting so it's a little tricky to diagnose you don't see that
one as often either
this is sort of a illustration of the
the type that I just described this one at the very top here
is called benign multiple sclerosis that
you know it it we don't see that one a whole whole lot there's a very few
people that have multiple sclerosis but
they the completely return back to normal and they just don't really
develop disability over their lifetime
it definitely occurs it's just not as common
and we don't we don't tend to focus on that one as much either
those people are usually kinda grouped in with the relapsing-remitting because
it is so soimilar there's relapses
the disability just doesn't seem to be as profound
but you can see with this illustration was trying to say is that
with with each relapse there's a sort of a peak in disability
the the y-axis here's the disability factor this is time
so as our lifetime goes on there's a a relapse
and we get better but if you notice you don't completely return to baseline
you may have a teensy bit of a residual weakness or whatever your
disability is
and then a few years go by and then you have another relapse and maybe you still
don't return exactly to that baseline at you are at
and as it goes on it's just a little bit gradual progression of the disability
component
with primary progressive as I said there's just really no relapses there's
just
a continual steady increase in the amount of disability
over time but you just don't see those peaks in sudden onset of symptoms
the secondary progressive form here is very similar but as I said there's
just a much more
you know a much less recovery to
to the baseline there and it just as you get later in life to
even the relapses become less prominent so
and then this is the progressive relapsing
so symptoms I mean everybody wants know what are the symptoms I think so many
people in my office who come and say
I think I have MS I've been reading on the internet I think I have MS
please tell me I don't have MS.
I can't tell you how many times I see that and then there are the people that
come in they
possibly do have MS so how
how do we how does the neurologist know
well I mean obviously this is a great illustration because it shows that it
affects
every part of the body essentially
oftentimes initial symptoms can consist of loss of vision in one eye
or optic neuritis sudden wake up one morning can't see out of an eye
pain painful vision gradually progresses over a few days
and then after a few weeks starts to return that's very commonly seen as one
of the initial symptoms of MS
it can vary though I mean some people can have episodes
of double vision or sudden
imbalance but as I said earlier in the talk but symptoms have to be sorta
consistent and last for more than 24 hours so when people come to me and say
I woke up this morning my leg is numb and later in the afternoon it back to
normal
that's not MS okay certainly
sensation can be affected numbness
paresthesias meaning tingling burning that type of thing
that can that can definitely be MS but it's not something that you know we
wake up with in the morning and it's better by afternoon
that's different weakness
oftentimes the initial symptoms or later symptoms of a relapse
or weakness that affects a limb you know
my arm is all the sudden clumsier or heavier than it used to be and it's just
not getting better and
I think something's wrong its it's a profound neurologic symptom
that doesn't get better or doesn't get better right away
okay with the spinal cord
involvement you can see things like bowel and bladder dysfunction
urinary incontinence urinary urgency
having to go all the time difficulty emptying
things of that nature. it can affect our swallowing it can affect our speech
it can affect our cognition are focus our mood
are energy level I mean everyone who has MS
the most common complaint is fatigue. I'm tired I have no energy
I have to take a nap every day because it's just it wipes you out
so these are the symptoms but it's the way the symptoms present and the
duration and
and that that really helps the neurologist to to hone in on
this could possibly be an MS symptom.
so as I said when someone comes to me and they want to know how do I know if I
have MS
a neurologist is gonna really you know tease through the details
of the history the history to a neurologist is the most important thing
because
I wanna know what is happening right now but I also want to know what has
happened before
I mean what in your earlier you know years have you
presented with or have you had and your ignored it because it got better you didn't
think anything of it
um the timing of it as I said how long does it last
how when did it go away. has it ever come back
um that's really really critical to making a diagnosis
the neurologic exam is obviously very important
um and can only you know a neurologist is probably the only one who can do it
very well
um it's a challenging thing to do um the imaging of the brain and spinal cord
is very important
before we had MRI MS was much more difficult to diagnose because
we didn't have specific pictures where we could see the lesion or the
inflamation or the attack
um sometimes now less commonly we
we still do a spinal tap to make an analysis of the spinal fluid and see
that there's evidence and inflamation
but thirty years ago anyone who possibly had MS
got a spinal tap nowadays that's not necessarily the case
MRI has significantly brought us much more
advanced and we don't always have to do that now evoked potentials which are the
visual
um the visual testing to see if anyone's had optic neuritis
I mean we used to have to do those things to really solidify a diagnosis
and sometimes we didn't know sometimes we had to wait
now we sometimes may have to wait a little bit to see if there is another
relapse or see if there are new symptoms that develop
but most of the time or very very often
we can figure it out rather quickly because I technology has advanced so
much
but again I do see people sometimes where I say this is a clinically isolated syndrome
you have a high likelihood of developing MS based on your symptoms
based on your imaging but it's not a MS yet because they're very strict
criteria that a neurologist uses and I'm not going to get into
all that cause it's really boring and
so this is a typical MRI of a patient who's been affected by MS.
so I have two views here um this is a sagittal image and this is an axial image
of a typical
MRI so what we're seeing here is
these areas here here here
here sort of along the middle of the brain this is the these are the eyes here
this is the back of the head
the spinal cord starting to develop down here so
we're as a neurologist, we look kinda along the center of the brain where MS likes
to hang out
it tends to affect the portions near to the ventricle which is this portion here
and these are the ventricles here and here as well and
in both images you see these areas of inflamation
these bright spots on the brain and they really like to hang out near the
ventricles
we don't know why but um that's the sort of classic
picture of what an MS brain looks like these areas where the inflammation
is located is probably when a relapse occurred
so we like to monitor MRI's going down the road after a diagnosis is made
to monitor the progression of the disease to monitor if the
the medication that you're on is working it really provides a lot of
information
this is a picture of a spinal cord that has
um a lesion on it so kinda just a general
illustration of what we're looking for when a neurologist orders an MRI
that's why we want to get
so what do we do for treatment um there's no cure
but we have significantly advanced in therapies over the last twenty years
um there's at this time still enormous amount of research
in MS, um, they
as I said in the last three years there's been three new therapies that have come
out which I'll talk about in a few minutes
um there's a lot of drug trials going on right now there's clinical trials
there's
you know in the lab trials going on and we're moving
very much toward toward um you know
better therapies and therapies that are working much much
um stronger at reducing relapses and minimizing disability which is really
important
so obviously though it's still a balancing act because we have to
maintain our immune system and find a therapy that allows our immune system to
be suppressed enough so that it's not going to continue to attack itself
so it is rather challenging and that's why it's taken so long
to get to where we are now we have therapies available that work
with minimal side effects and um you
know that you can be on for a long a long period of time
so the treatments that we do have available obviously the acute relapse is
when something happens most the the the mainstay is steroids it still is
it was fifty years ago um when you have an acute relapse
if anyone has ever um had a relapse steroids are kinda the mainstay it ek
expedites the healing process it doesn't cure anything but we want to get you
back to your baseline as soon as
quickly as possible and get you back on
back on your feet. Um, the disease modifying therapies are the ones that
I'm gonna spend most my time talking about and the symptomatic therapies um
I'll touch on a little bit but that's really individual so
you know based on what your symptoms are there's there's multiple
treatment options but it's sort a very individualized
so in 1993 was the first
um disease modifying therapy that came out it was Betaseron
it was an enormous breakthrough for MS patients because all the sudden there
was something to put
to be on to reduce the relapse rate and to reduce the
potential of of progressing with disability
um since since that time so in 20 years
we've come up with 8 FDA-approved disease-modifying therapies
actually I think there's actually 9 but one of them I didn't include because I
don't see people using it much anymore because it has a lot of bad side effects
so kinda moving away from that one since we've gotten some newer ones
um ah
all of the disease modifying therapies that are on the market
um have been shown to reduce relapses most of them have been shown to at least
reduce the progression of disability and many of them have
have also been shown to reduce the the new lesions seen on the MRIs
that we that we periodically check
so most of the actually all the therapies are
generally safe and well tolerated when I say generally there are a few
um significant complications with several of the therapies that we very
closely monitor and we look out for and
and we're very on top of those ah potential risks
so we'll talk about that um on avaerage the injectable disease modifying
therapies have been shown to reduce relapes by 30 percent
the injectable um have been around the longest
um only in the last three years are there pills available now so most people who
have had MS
this long have been on injectable therapies of some kind
um all have an anti-inflammatory effect on the immune system
so reducing inflammation bringing the immune system down to a more manageable
level
and reducing the relapses um most of the therapies require some kind of blood
monitoring
there are a few that don't require as much but there are you know a maintenance test that
oftentimes have to be done to ensure that it is it safe to continue beyond
so the first category is that I'm gonna talk about are the
interferons interferons are
normally present in our immune system and
betaseron is the first one that came out it's also called extavia
it's believed to suppress the
movement of T cells which are a typeof immune cell
across the blood-brain barrier so there's a there's a wall between like
the the blood flow and the brains cells themselves
and so the immune cells have to sort of
transpose across that and invade the brain
to cause the attack so this medication was
aimed at reducing that transposition of the T cells across the barrier
the barrier into the brain this is an injectable medication every other day
it's been around the longest there's been a lot of people who are on it at
first
and then since that came out there's a few others that have come out as well in
the same category
it's approved for relapsing-remitting multiple sclerosis
it as I said reduces relapse and by about thirty percent
so it's a pretty reasonable number it does have the unfortunate side effect
of them flu-like side effects
with the injectables but um
for its different for everybody and we have you know
wonderful nurses that we you know use to train our patients to help sort of minimize
those unfortunate side effects
um interferon um beta-1a
are the avonex and the rebif this is the same medication but in a different
form in a little bit different dose
so avonex is a is a once-weekly injection
um it reduces relapses as I said by about thirty percent as well
all the interferons are about the same in terms of numbers
it's been shown to slow disability progression which betaseron did not
and also reduce the MRI
leasions that are seen
mmm so avonex is once a week rebif is three times per week
under the skin both have flu-like side effects unfortunately
but as I said for most people it's usually worse in the beginning when
you're starting the therapy
as you sort of get established on the therapy the flu-like side effects do tend
to dissipate
and you sort of learn how to how to manage it you pick a day that sorta works for
you that you're able to be
a little under the weather and still kinda go on with your day to day
functioning
with both of these medications um blood monitoring is required you have to
monitor the lever we monitor the
the the white count to make sure that you still have a good immune system in
that
the platelets and other things haven't dropped so we do do periodic blood
monitoring with the both of these medications
the other injectable medication is glatiramer acetate or Copaxone
Copaxone is a different category of medication that's not an interferon
its actually a combination of amino acids
that are believed to be found in the the myelin
or the on the a
it resemble the mylan and it supposed
to suppress the T cells
and reduce inflammation um
it's approved for relapsing-remitting multiple sclerosis as well
it does also have a 30 percent reduction in relapse rate
it has not been shown to decrease disability
um but it is widely prescribed it every day
under the skin it has very minimal side effect it has no flu-like side
effects
it is tolerated by most people who do the injections
and its kind this is the one I kinda tell people it's like being a diabetic you
sort of
just do your shot every day and you just go on with your
your day so this is one that's been very widely prescribed
for women who want to have children it's safe during pregnancy this is the only
one that has been
shown to be safe for pregnancy for women
that are in their childbearing years and affected by MS this is one that is
often used because you know you don't have to go off of it you don't have to
go back on it for some of these medications it takes several months before they reach
full effectiveness so that's a nice that's a nice perk
Tysabri is a once-a-month infusion
Tysabri is a very wonderful drug when it came on the market it was like
the breakthrough it was I believe 2007 I have to look that up specifically but
it may have been 2007 when it came onto the market
and it was pulled from the market a year later because of
an infection of the brain that was found to occur called PML
PML is a viral infection that is irreversible
and it can result in death it can result in very significant
disability and it is not taken lightly by any neurologist
it is a wonderful drug now in the sense that it's
once a month you go for your fusion you go home and that's it for the month
and you feel great and there's no side effect and its a fantastic option
but it has very specific protocol
that has to be very closely adhered to only approved
neurologists and approved centers can administer this medication
you have to have very strict criteria
with every infusion you have to have a patient who is incredibly willing to
adhere to the
rules and it it is very closely
monitored but it has a reduction relapses of by about 67 percent
so far surpasses all the other ones
it slows disability progression and reduces the MRI lesion
and it's a great drug but I'll tell you have seen PML
and it's not great it's horrible it kills people
its it is worse than MS so
that's why we don't we don't pick this for every person
with MS this is a medication that is reserved for patients who have
failed other therapies and are having progression and we need to do something
stronger
but it's a great drug
Yes
when it is used yes
as is the case with some of these other medications that we'll talk
about so
these are the new oral therapies so any other a 50 and tech for their
of health which is awesome no injection many more
so don't wanna make you mine in 2010
it's a once-a-day tablet it has a reduction in relapse is about fifty
percent
but unfortunately this one has um some unfortunate cardiac side effect that we
have to really closely monitored
there have been some reports of sudden cardiac death with this medication so we
have to pick patient to
have no history of cardiac problems are very minimal risk
risk of cardiac disease on
it has it produces a disease progression it reduces MRI
region on it up believed to keep the
lymphocytes inside the lymph nodes and prevent them from
I'm going to go to the brain so that's how we think it works
I'm this one can also affect our vision in 'cause a macular degeneration so
that's something that has to be screen while on this medication
on there's a little bit of blood monitoring of the screen for z/os oster
or her
on that shingles by rest but its job
it's a good medicine to it's been out for three almost three years now
and there's a number people on it and they're doing great sold
that was the first one
I last follow by your weather pro why we always called theraflu my
careful in mind is a agent that has been I
around for I'm not not here for the night um
left phone in my which is another derivative I love up here for the night
or similar
has been around for much longer so we do have some information about this
on similar products and it was approved
as a once-a-day tab what you is believed to have hit a flamer three properties
that reduce the lymphocytes and the
in the central nervous system the specific seven or a little
little sticky to me I don't completely understand that exactly but
its I'm it's been around and it's starting to be prescribed more commonly
on it has a specific similar with the injectables about 30 percent
I'm however the big the big fancy statistic here is that eighty percent
left new lesions on MRI which is you know
a really important I factor for for patients
this is %uh pregnancy category axo anyone who's in there
childbearing age range is probably not going to be a good candidate for this
medication because it's very risky
I'm category act in the medical world mean
absolutely not cannot get pregnant on this medication
even males who on could potentially impregnate their wives are supposed to
be warned about that because that's been found
from and also to be a problem so we have to monitor blood pressure and we have to
do a TV screen but this is a once-a-day medication that
is an option for people if you're me on your childbearing years and it's okay to
be on something like this
than this is a great option I I mean I'm
I'm really excited about the final South I'm and tech for there is the most
recent one that just came out a few months ago
it's a twice-a-day medication it has a little bit different
I'm back in them mechanism of action a predominately work from the anti-oxidant
pathway
from which is kinda a new thing I mean we vote we always hear about
anti-oxidant thing as both a drink
all these and accident you know through you said that thing for
it that there there is a lot of ongoing research in this area so there's
probably going to be more drugs in the future coming out in the area
this Heather a reduction relaxes by of 53 percent
on disability is also decreased by 38 percent
the side effect prior profile is pretty good I mean it it does cost them
flashing
for people the face feel a little hot for about an hour so after your does
tends to get better after about an hour from what I'm told
and tends to minimize over the course of the first few
first few weeks by the end of the first month and told that much better
I'm it can cause an upset stomach some gastrointestinal discomfort
but its sounds like a great drug also very little fight a fact
starting to see i mean I have a couple people are there now I haven't heard a
lot about feedback fell
I've talked with some colleagues who think it's great I worked in a center
that this was a
medication on in the research trial I so
great great day out on the fun this medication was available
in Europe for psoriasis so it's been on the market for a long long time
and they have a lot of good data that its safe and effective of L
so this is a great option for people
so with all these nomads how did the neurologist user how does the patient
on you know how do they know if their candidate for these new medications
well that's complicated a little bit arm you know for patients that have
been stable on their injectable medications
it's really hard to to take them off a bit right away knowing that they're
doing so while
for patients who have horrible side effects they've been he never have an
accident when he nearly there for whatever the case maybe they had their
compactness
and the they just have had horrible tolerability issue 3 years and now these
pills are available I mean that's a reasonable option
but it's very individualized with each case scenario its it differ
on thought process into why would we switch
for some people they they do fine air duct herbal medications but they're just
getting worse
and they need something different and these are available and they have a
different mechanism
action so it's a different way of fighting of immune system so that's a
reason to pick it
for some people they have no symptoms but there are my eyes are looking worth
and something needs to be done so that disease progression or disability
doesn't occur in 10 years
so I mean there are a lot of thoughts that go into a neurologist mind when we
meet with you every visit to talk to talk about your therapy
I'm it's not an easy choice on
it's it's a it's a big it's a big decision to switch therapies
and there's risk with which in therapy and their side effects were searching
therapy
so is very individualized anyone know them if they know all about
the the risks of medication and it's it's a case by case decision
so what if I for one person the necessary pie for the next person
so what if you think you have an *** or what if you know somebody who that you
are concerned might have my math the to see somebody about it they need to get
evaluated by a neurologist somebody who is familiar with a mass
who can really look into it on because what we know about a mass and what we've
seen
even before before I was even born and 31 years old
well I mean this has been a long for around for a long time
and you know my trainers have been doing this for a long time
they saw people when there was nothing to do and every
year things got worse but now with therapy
things slow down and and people are living longer with left disability with
more functionality there
no one not me it's now they have amassed because they can you know
have less and less symptoms as they're like 10 cause on and if you don't get
treatment as soon as possible or
as early as you can then the risk for relapse is increase as
and with that is disability so the earlier you're suspecting sometimes
the girl you should see somebody Inc and figure it out
for people who have been diagnosed with MS and have been living with us for
years that the whole different you know it's a different ballgame
arm the symptomatic therapies are as I said earlier very individualized there's
plenty of medications out there
to treat the fatigue to treat the specificity to treat the depression to
treat the bladder problems
to you know I mean there's there's lots of things that we have in its obviously
with one thing is that work we try something out then if you know something
doesn't work we stick with it
but its its it depends on the same found it depends on the person
but I'm you know that's a conversation you have with your neurologist
so when when a piece with a mask on through
my office and I see them and I say how are you doing
me not the time to say all my fighters firing me or
are not sleeping or how or and on the top I mean
because thats that the conversation that you have with your neurologist
is how are you doing mean when when I walk in there are many say how are you
know
that's what I'm I'm great but I'm the Safari me
I mean that's what the neurologist new snow that's how we decide how to treat
your symptoms
and what to change in what to do differently so
physical therapy is a great option occupational therapy for people who have
you know you know different I mean it's different for everybody but those are
great resource to
the physical therapist in this town are awesome
their top-notch I've sold many great responses from people
that have gone physical therapy for you know not just amassed we have a really
great
I'm community with wonderful resource s so I find take advantage of that term in
patients and I always
make that an option on assistive devices sometimes are very helpful for
you know foot drop or whatever the case may be on
you know when upper extremities are spastic and it's hard to go grab things
are open jars and
its its there's things available for that so you have to talk to neurologist
about it
so that we can get get to the healthy you need
living environment something had to be changed living in a house that doesn't
have a ton affairs
you know bathroom accommodation things like that so that we can minimize
complications
exercise is always you know I never tell them not to exercise I mean there's out
there different degrees of exercisers different things to do
exercise is really important healthy diet
good sleep home you know stuff stress management hard
stress management is something that and the doctor can preach to you and any
person can preach to you
but it you know I mean every person has stress and everyone deals with it
differently
but it is important because when you're more stressed your symptoms are
accentuated and it's really important to sort of keep that under control
and if you're struggling with that to ask for help
support refer great till I'm for pork ribs are wonderful in the sense that
they can
give you someone from listen to your struggle
and also you know here what other people have gone through it it's wonderful
in some cases they can make you a little nervous that oh my gosh I am I gonna be
in a wheelchair because that's the most common fear
everybody and and I will tell you it's not it's getting better
I mean people are doing better for longer with
the advancement a medication so I think the people that are weird wheelchairs
thirty years ago if they were to have been diagnosed now
maybe wouldn't be in a wheelchair as feeling or maybe not ever
its it's two things have changed and things have advance and we definitely
are making a lot of strides
so I put the fight in here actually we have a handout over here
with this information so these are just some wonderful online resources that of
anybody familiar with them but the National MS Society is a fantastic
resource
for helping with you know disability benefits for insurance for work
for all sorts of questions that we face in our day-to-day routine
when you're living with a math I'm namath lifelines them a
active sources those are both online resources that can answer questions that
can provide
I'm you know there's a mentor
their I what I think both of them actually I must leave by the time as
active force
have resources to talk with a mentor if you need just somebody to talk to
or someone who's been there there there those resources there
on the ms. foundation & Spa shared solutions is great because they help
with
you know in questions at work questions about injectable therapies how to make
things better if you're struggling
from they're they're wonderful owner says that can provide way more
our answers to questions that probably I can hit and fell
I use them a lot self
and on your side and I went a little bit over arm there's about 10 minutes left
I'll
have out safer any questions so I hope that wasn't too boring or 200
perfect I okay
thank you I
the the question why is on I had mentioned some speech sometimes
and the question was what would be some speech something that frontal lobe
lesions
while I suppose that's a complicated answer
as as is the case with most neurology frontal lobe lesions if they involve
them older
pathway can affect you know the mechanics above the mouth
so can make you have a more def arthritic or more about flirty your
speech
are making about the throat so could have more modest
phonic or some kind of like problem
I know how to explain that very well but it it can make your your
speech down a little thicker because the the vocal cords and the
the the throat doesn't move as nice and easy as it use to sell
I'm that would be the most obvious thing I would think of
so the question I was in the video presentation there was a comment about
how the
the pathway or about the pathophysiology of an *** is that detects the mylan
but also that attacks the nerve fiber itself
meaning axe on and that is true
what we learned about our math with MRI is that
when the mylan is damaged the accent beneath it
can start to wither away because it is that we don't know why that happens
but probably because it isn't protected as well and so the signal isn't being
train ducted as well and the nerve starts to die of a little bit
and we know that because I'm MRI we see these
black holes is what they're called but their holes
in the brain that occur almost on a bit like a stroke but it's not a stroke it's
completely different ideology
but it's a hole where the the nerve itself
has basically sort of deteriorated
we didn't really know that until MRI so the theory has changed a little bit
and that's where we think the disease disability long term comes from
is when those black hole or the the axe on itself
has started to be this integrated or affected is when the
the secondary progressive disease come then we've only learned that over the
past
twenty years but
you
it without contrast it's actually I'm a on the t1 sequences which
I'm I have many sequences that we look at and when we're looking for active
information we always look at the flare fake ones are the key to flare sequence
that those were the sequence as shown in the images during this presentation
but they're also the sequence called t1 and that does demonstrate the black hole
so we don't see it an early amassed we see then later on that
cell but yes that's a wonderful question we didn't know that
for a long time I'm the question for everybody is
does the number I've lesions on MRI correlate with the number relapses or
the number are the severity of disability I got
answer is No I'm there are MRI's
they look horrible like the 1i showed you I've no idea that Beijing was
I I just picked that picture because I thought it was a good illustration
but MRI can be horribly deceiving
and look where the like that and have very few clinical symptoms
okay the opposite case can occur when the brain never really look that bad
but the location of the lesion can be in that specific precise location that it
put leaves you with
a lot a disability so patients who have brain stem
or spinal cord lesions and not a lot in the outer portions of the brain
can have a lot of disability in life really bad and their brain doesn't look
that bad
so it doesn't always correlate
but the reason we monitor MRI is because we wanna see is there any new
regions that have had some sort of clinical correlation
because there is a silent component and math because every new lease and doesn't
always have a symptom
so not in my training are not in my
career time I'm I get a repeat didn't hear the question
on can we use combination therapy to improve
the immune system fight against I math I'm
the reason the answers now we don't do that I'm
and the reason is because for example in
the i text every trial those patients
that developed p.m. I'll were also another 30 some of them have been on
avonex
okay and some of them have been on other chemotherapy drugs for other conditions
and we think that that significantly increases the risk of infection
and so we're incredibly leary I've exposing people to too many infections
because brain infections are very serious
so we don't take that lightly and
most of the studies are are compared against placebo
on there's very few trial to compare head to head against another product
but they do not allow people to be in studies with combination therapy
for that reason because I've the risk of infection
so it ecological box and a lot of people have discussed that
but in my training in my career and even I think
in the twenty years that they've been available people are just not doing that
I mean I've I've not seen that anywhere
cell and in fact sometimes when we take people off medication
and what's worse is something different we give them a little bit of a washout
period
meaning some time to get that drive out other system so that that is not a risk
exercise for that's great
it's mentally therapeutic it obviously very you feel better
and we think that keeps you a mandatory for longer felt thank you
that that's great can you still have a mass if you don't have lesions on your
brain
probably not okay that I am
there is a condition called honor my latest after car which is a very into a
mass
it's not an *** but it is usually consist of spinal cord lesions
with no liens on the brain and optic nerve so it's
nerves on the eyes and spinal cord and nothing in the brain
which it's very similar amassed but if you have a massive
you have something on your bringing now
in my opinion is in my opinion is a fun better than vitamin D
I'm I don't know the answer to that I think it
I think it might be I mean look at the people that live close to the equator
they don't have this problem
see kinda wonder right but we don't have that ability we'll we have
you know how many month of cloudiness and no sunlight
and it makes us all depressed and cranky but
I mean it it does make you wonder bowl that's all we have
as the vitamin d3 for or a supplement in this area the country's
how often that's a hard question how often it is is it in the arms
versus the legs or probably refers to the life versus the arms or both
I'm I don't know that I've ever
paid attention to that truthfully I think we notice when it's in
the legs more of 10 because it affects their walking
effects are emulation but the arms are not taken lightly either i mean writing
we are driving everything we do I mean I don't I don't really have an answer to
that because I never really paid attention to watch is more prominent
for a lot of people in effect 15 the body so if the arm and a leg on one side
for of but is it just one arm or just one lag
I don't know which one mark on for and this is a complicated disease because
everybody's different not one single person with MS looks like the next
person
it's very variable cell it which is the challenge
so that I thought he wants to know because the location of the lesion that
MRI
are so close to the ventricles in the center of the brain
does that mean that there's something having to do with what we ingest
into our bodies and that it's crossing the blood-brain barrier somehow and
affecting
the brain in the centre portions from something we ate
I don't know I i'm never heard back that phiri
inexpensive one
for insurance is a lot of times are you know
people use their insurance if the pay for those expensive thing so that's why
they
hurts so much because insurance companies molpe
the big box and if you don't have insurance or free insurance won't pay
the static at the big bucks
so I I truthfully I don't have enough lot of knowledge about where that
cheapest devices are located I know there's just you know
I i refer people to medical device stores because every month options
but I don't know that that you're right they're not they're not cheap
it's such a in my practice I'm
I don't want anyone I don't want anybody not be on drug because they don't have
insurance
there are so many resources most of these drug companies
will make sure you get the drug and and most of them have assistance programs
so that you can get it for free for a year or two or you can pay
you have attend our copay or they almost all these drug companies bent over
backwards to get you on their
their therapies I meet my partner trained in inner-city Chicago
in you know he he saw people who had no money no place to live and we're getting
drugs
so these drug companies will make sure that you can get therapy if you have a
diagnosis so
somebody who told me because they don't have insurance enactment take their
medication
I can I that's not enough for me me hi
I really do work very hard to get people on therapy because I
really strongly believe that you know I don't want to be disabled
so I I want I want to make any opportunity
to keep you functional keep you living as long as possible
I think that's changing a lot now I think one other
one other company they know for sure absolutely will pay for your dog if you
can afford it
and in fact actually to %uh the company then oh well yes people with the
injectable the aft
since the orals have come available I mean I think I've only been here for a
year
okay so I've assumed a lot of people who have been in this community and had a
diagnosis
and you know maybe they're just looking for a new neurologist
so yeah people that I've had a long term diagnosis and he did the injectables and
couldn't deal with it
both people have been offered Drug I tried to get them back on therapies
I really have because I'm especially for coming in there are already using a cane
or there already have been
you know something going on or or they're having relaxes and they're still
me the biggest thing is clinically how are they doing it for not having
relapses anymore
and the baby there there stable
or their may be progressing a little bit you know
that's going to be a different situation because these medications are pro for
relapsing forms
so on paper that is something we have to be careful about because if you're not
having relapses anymore
it may not be covered cell these these therapies are only study in
relapsing-remitting cases are not studied in primary progressive they're
not studying and secondary progressive
so that's a little bit of an individualized case as well
but yeah if people have an offer the injectable
I am trying to get them back on your therapy is
thank you so much to everyone okay