Aa
From the Proverbial Horses Mouth!
The following was taken directly from the MS Society of Canada's website...perhaps I should send it to a certain neuro...no wait, she probably WROTE IT!!!
The Treatment Question:
Should I Start an
MS Medication?:
The decision to start therapy is a very personal one. MS is a chronic
condition and you will need to take your medication for the foreseeable
future. So you will have to commit to therapy and incorporate
the new treatment regimen into your lifestyle.
In this booklet we’ll examine what is known about the MS disease
process, why relapses and remissions occur, and how medications
may help you combat the disease. For as many people have found,
starting therapy is a positive first step in their journey of living
with MS.
This publication has been produced by the Multiple Sclerosis Society
of Canada as part of an ongoing effort to provide information and
resources to people with MS and their families. For more information,
call the MS Society toll-free at XXXXXXXXXXXXXor visit our website
at www.mssociety.ca.
A relapse generally indicates that you are experiencing a worsening
of inflammatory activity in the brain and/or spinal cord. However,
the frequency of relapses is a poor indicator of MS disease activity
and can give you a false sense of security. Relapses have been described
as the tip of the iceberg. About 90% of MS lesions in the brain and
spinal cord don’t result in any symptoms at all. During all those periods
when you are experiencing no MS symptoms, the disease is working
“under the radar”, causing inflammation and damage to your nervous
system. You don’t realize that demyelination and axonal loss are
occurring because they are operating below the “clinical threshold”,
i.e. there are no obvious symptoms
2 — The Treatment Question: Should I Start an MS Medication?
Why does MS Progress?
The inflammation and demyelination seen in MS don’t go unchecked.
Your body fights back. As nerves become demyelinated, specialized
cells (called oligodendrocytes) produce new myelin to repair the
damage. This can partially restore nerve function, which may help
to explain why symptoms go away during periods of remission.
However, patching up myelin isn’t an efficient process and early on
in the disease, the repair work can fall behind. So there is a slow
accumulation of damage over time. The situation can be likened to
a busy highway. If maintenance crews don’t keep up with all of the
potholes, parts of the road will eventually collapse. In the nervous
system, this is known as axonal transection — when an axon (nerve
fibre) accumulates so much damage that it becomes severed. No
more traffic can travel along that axon.
At some point, the ongoing accumulation of nerve damage may signal
the beginning of the secondary-progressive phase of MS.Most people
with relapsing-remitting MS will go on to develop secondary-progressive
MS. During this phase, there are generally fewer relapses and less
inflammatory activity, but the burden of disease steadily increases
because of ongoing axonal damage.
The Treatment Question: Should I Start an MS Medication?
3—The relapsing-remitting phase of MS is marked by periodic relapses
and remissions . However, even during periods when there are no symptoms, there
is a steady accumulation of axonal loss. This loss of axons will
eventually lead to disabilities.
.
Many researchers now believe that progression of disability occurs
when nerve damage reaches the “tipping point” — the point at
which countless small changes suddenly produce a big effect. It’s
akin to that one snowflake too many that causes an avalanche.
In MS, it isn’t entirely clear when the tipping point will occur. A
number of studies have suggested that when disability is assessed
during the Expanded Disability Status Scale (EDSS), the tipping
point is when a score of EDSS 4 is sustained. This corresponds to a
person having severely disabling symptoms but is still self-sufficient
and able to walk without help. It’s important to note that a score
of EDSS 4 may happen during the course of a relapse in relapsingremitting
MS, but this amount of disability will later improve during
remission. A sustained score of EDSS 4 is quite different: it is the
amount of disability you have day-to-day whether you are having
a relapse or not.
Most people with relapsing-remitting MS will develop secondaryprogressive
MS, however, the time that it takes to reach this point
varies widely — from a few years to over 20 years. It depends on
the person.
Perhaps you know people who have experienced severe disability,
and others who are still fully functional after 20 years of living with
MS.Why some people progress more rapidly than others isn’t entirely
clear. It may be that people who experience little or no disability
are blessed with good genes, good repair mechanisms or good luck.
Unfortunately, there’s no way to tell at the outset who will have an
easier time of it and who will develop disabilities.
MS is an illness of uncertainty: What symptoms will I have? Will I
have a relapse? Will I be able to do everything I want to do today?
And perhaps the greatest of all the uncertainties is: Will I become
disabled? This is one of the biggest worries for people living with MS.
But what does seems certain amid all the uncertainties is that it’s crucial
to do everything possible to slow down the disease process and
avoid reaching the tipping point of nerve damage. For once that
threshold has been crossed, whatever functions that have been lost
cannot be regained. The damage is irreversible and permanent.
I only cut and pasted the parts that refer to the issue I have been struggling with...the fact that someone other than Quix is admitting to the fact that MS is never in-active is somewhat comforting and perhaps a sign that I may eventually get the help I require...however, I will not get my hopes up because I have done that too often only to have my emotions sent crashing into another depression.
Just wanted to share...
Lots of Hugs,
Rena
The Treatment Question:
Should I Start an
MS Medication?:
The decision to start therapy is a very personal one. MS is a chronic
condition and you will need to take your medication for the foreseeable
future. So you will have to commit to therapy and incorporate
the new treatment regimen into your lifestyle.
In this booklet we’ll examine what is known about the MS disease
process, why relapses and remissions occur, and how medications
may help you combat the disease. For as many people have found,
starting therapy is a positive first step in their journey of living
with MS.
This publication has been produced by the Multiple Sclerosis Society
of Canada as part of an ongoing effort to provide information and
resources to people with MS and their families. For more information,
call the MS Society toll-free at XXXXXXXXXXXXXor visit our website
at www.mssociety.ca.
A relapse generally indicates that you are experiencing a worsening
of inflammatory activity in the brain and/or spinal cord. However,
the frequency of relapses is a poor indicator of MS disease activity
and can give you a false sense of security. Relapses have been described
as the tip of the iceberg. About 90% of MS lesions in the brain and
spinal cord don’t result in any symptoms at all. During all those periods
when you are experiencing no MS symptoms, the disease is working
“under the radar”, causing inflammation and damage to your nervous
system. You don’t realize that demyelination and axonal loss are
occurring because they are operating below the “clinical threshold”,
i.e. there are no obvious symptoms
2 — The Treatment Question: Should I Start an MS Medication?
Why does MS Progress?
The inflammation and demyelination seen in MS don’t go unchecked.
Your body fights back. As nerves become demyelinated, specialized
cells (called oligodendrocytes) produce new myelin to repair the
damage. This can partially restore nerve function, which may help
to explain why symptoms go away during periods of remission.
However, patching up myelin isn’t an efficient process and early on
in the disease, the repair work can fall behind. So there is a slow
accumulation of damage over time. The situation can be likened to
a busy highway. If maintenance crews don’t keep up with all of the
potholes, parts of the road will eventually collapse. In the nervous
system, this is known as axonal transection — when an axon (nerve
fibre) accumulates so much damage that it becomes severed. No
more traffic can travel along that axon.
At some point, the ongoing accumulation of nerve damage may signal
the beginning of the secondary-progressive phase of MS.Most people
with relapsing-remitting MS will go on to develop secondary-progressive
MS. During this phase, there are generally fewer relapses and less
inflammatory activity, but the burden of disease steadily increases
because of ongoing axonal damage.
The Treatment Question: Should I Start an MS Medication?
3—The relapsing-remitting phase of MS is marked by periodic relapses
and remissions . However, even during periods when there are no symptoms, there
is a steady accumulation of axonal loss. This loss of axons will
eventually lead to disabilities.
.
Many researchers now believe that progression of disability occurs
when nerve damage reaches the “tipping point” — the point at
which countless small changes suddenly produce a big effect. It’s
akin to that one snowflake too many that causes an avalanche.
In MS, it isn’t entirely clear when the tipping point will occur. A
number of studies have suggested that when disability is assessed
during the Expanded Disability Status Scale (EDSS), the tipping
point is when a score of EDSS 4 is sustained. This corresponds to a
person having severely disabling symptoms but is still self-sufficient
and able to walk without help. It’s important to note that a score
of EDSS 4 may happen during the course of a relapse in relapsingremitting
MS, but this amount of disability will later improve during
remission. A sustained score of EDSS 4 is quite different: it is the
amount of disability you have day-to-day whether you are having
a relapse or not.
Most people with relapsing-remitting MS will develop secondaryprogressive
MS, however, the time that it takes to reach this point
varies widely — from a few years to over 20 years. It depends on
the person.
Perhaps you know people who have experienced severe disability,
and others who are still fully functional after 20 years of living with
MS.Why some people progress more rapidly than others isn’t entirely
clear. It may be that people who experience little or no disability
are blessed with good genes, good repair mechanisms or good luck.
Unfortunately, there’s no way to tell at the outset who will have an
easier time of it and who will develop disabilities.
MS is an illness of uncertainty: What symptoms will I have? Will I
have a relapse? Will I be able to do everything I want to do today?
And perhaps the greatest of all the uncertainties is: Will I become
disabled? This is one of the biggest worries for people living with MS.
But what does seems certain amid all the uncertainties is that it’s crucial
to do everything possible to slow down the disease process and
avoid reaching the tipping point of nerve damage. For once that
threshold has been crossed, whatever functions that have been lost
cannot be regained. The damage is irreversible and permanent.
I only cut and pasted the parts that refer to the issue I have been struggling with...the fact that someone other than Quix is admitting to the fact that MS is never in-active is somewhat comforting and perhaps a sign that I may eventually get the help I require...however, I will not get my hopes up because I have done that too often only to have my emotions sent crashing into another depression.
Just wanted to share...
Lots of Hugs,
Rena
I could live with fishing in Hawaii I am sure! But Alaska has a certain draw to it and it's somewhere I have wanted to go to for a LONG time...I will make it to Hawaii too but won't go to either until hubby gets his citizenship straightened out...he was born in Florida but was brought to Canada at 6 weeks and has to apply for Canadian Citizenship before we leave the country or they may not let him back in! Pain in the backside I say!
Cre8_it...I am used to going upstream...not swimming perhaps cause I don't know how but going against the norm is the norm for me so I will keep paddling and stay hopeful! Thanks for the kind words!
Rena
Cre8_it...I am used to going upstream...not swimming perhaps cause I don't know how but going against the norm is the norm for me so I will keep paddling and stay hopeful! Thanks for the kind words!
Rena
I'm so glad that your not giving up! It's good that you have found this info to back you up!
It's like swimming upstream! ~~~~ < You'll get there!
It's like swimming upstream! ~~~~ < You'll get there!
use to have family in alaska, now on the island of hilo in hawaii? what do you think of the fishing there?ALSO.... salmon= grizzy bears? I is very afraid of bears!!!
humming
ps yep, i'm going to find away to copy all you wrote on this thread,it would be such a blessing if it ended up being a change of direction for so many of us huh? thanks sweety
humming
ps yep, i'm going to find away to copy all you wrote on this thread,it would be such a blessing if it ended up being a change of direction for so many of us huh? thanks sweety
I am glad that this has been of some help to you and I really hope that more people see it as it is solid data that proves that MS is never in-active and should give our members a little boost in their fight for a diagnosis. Everyone should also take Wobbly's advice and either print what I posted or go to the MS Society of Canada website and print it directly from there and take a copy to every appointment you have with a doctor. It may prove to be that invaluable piece of information that could change the direction the neurologist you are seeing is going.
humming...would love to go fishing with you sometime...maybe we can meet up next year in Alaska at the Kluane River when the Salmon are running and we can get ourselves a monster or two! hehe
humming...would love to go fishing with you sometime...maybe we can meet up next year in Alaska at the Kluane River when the Salmon are running and we can get ourselves a monster or two! hehe
thanks for this info...you should print it and take it with you all ways... make extra copies for any Dr that might need a refersher course...
you are such a great friend to have on this forum...like all of us here.. we bring so much to each other and help each other..
thanks again
take care
andi
LL
you are such a great friend to have on this forum...like all of us here.. we bring so much to each other and help each other..
thanks again
take care
andi
LL
hi sweet and smart person,
I don't post much, but I had to say this time a great big thank you,it is wonderful all you shared,it felt like a feast, and I feel like i've been given a gift, but I don't know how to explain why.
my battle is three years this week, but i haven't fought for anything for over a year.I did just with a make an appointment witha highly recommended nero.my friend did the research,and in her hosiptal position was able to send letters out asking her most respected doctors, who could she send me to with hope for good, fair, and I pray respectful care. its not til the end of october, but thats okay.
i've been thinking about going to an eye doctor,no real problems, just tired eyes,tired me all over huh?.I think your post has made me think this would be a very good idea now!
and i just wanted you to know you've helped me.everytime i read a post from you, you amaze me.i'll take half your bravery anytime.I suffer from undxed bilateral tn too, don't you suffer from this? anyway, thank you for lets say...being the kind, giving person you are, I for one, received much this time around.oh, i had a possiable/proable ms dx for a wee bit, but then next doc said no, just bad fibro,but i know and feel so much more is on my heels nipping and tripping me up, i'm ready to fight this time for a answer, a name,and the why whatever has turned my like upside down,oh, I love fishing,I get so excited my husband gets envious, hee hee love and blessings
humming4u
I don't post much, but I had to say this time a great big thank you,it is wonderful all you shared,it felt like a feast, and I feel like i've been given a gift, but I don't know how to explain why.
my battle is three years this week, but i haven't fought for anything for over a year.I did just with a make an appointment witha highly recommended nero.my friend did the research,and in her hosiptal position was able to send letters out asking her most respected doctors, who could she send me to with hope for good, fair, and I pray respectful care. its not til the end of october, but thats okay.
i've been thinking about going to an eye doctor,no real problems, just tired eyes,tired me all over huh?.I think your post has made me think this would be a very good idea now!
and i just wanted you to know you've helped me.everytime i read a post from you, you amaze me.i'll take half your bravery anytime.I suffer from undxed bilateral tn too, don't you suffer from this? anyway, thank you for lets say...being the kind, giving person you are, I for one, received much this time around.oh, i had a possiable/proable ms dx for a wee bit, but then next doc said no, just bad fibro,but i know and feel so much more is on my heels nipping and tripping me up, i'm ready to fight this time for a answer, a name,and the why whatever has turned my like upside down,oh, I love fishing,I get so excited my husband gets envious, hee hee love and blessings
humming4u
There have been a few of us lately that have decided to throw in the towel for one reason or another but it all seems to boil down to the frustration of not getting a diagnosis or treatment for whatever our symptoms are. I recently tried to give up the fight but it was noted by one of our dear members that perhaps if I do give it up, that will be when the ball will start rolling and it appears that wish was right!
For all of you that feel like throwing in the towel...back off a bit, take a break, give yourself some down time. I am here every, single day (unless I am fishing of course) and I have found that taking a break or even just letting it go for a few hours can be of the greatest value to us. It seems that we can clear our heads and start out fresh and all that anger and frustration seems to dissipate...we can look at things from a different perspective and it is usually for our benefit.
I believe that sometimes it is the same for the doctors. Take Yorkie's doctor for example...he is totally stumped as to what is ailing Yorkie and has pretty much given up on helping her. That is the most frustrating situation to be in...BUT...Yorkie is going to take a break while she sells her house and I think it can only do some good by starting out fresh with a new doctor in a new state. We all become stagnant in our thinking if we are on the same subject constantly and tend to spin our wheels and not go anywhere if we don't step back and look at things from a different angle. It's somewhat the same as spinning your wheels on a patch of ice and unless you put the car in reverse and move the car off the ice..the wheels will continue to spin.
I wish the best for all of you that need to take a break but I also hope that you will stay in touch with us and not just disappear. The information that has been falling in my lap may continue to do so and because it is all new information, there may be something along the line that will help you too! Don't give up completely please...we will keep our eyes peeled for anything we think might help as well and if you are not here we will have a hard time passing it on to you.
I haven't given up and I will continue to fight but don't be surprised if I need a break occasionally...I hate that smell of burning rubber when my tires are spinning...no wait, that's not actually a smell...no one else smells it so it must be my brain! hehe (another thing to bring up to the neuro/psych I guess)
Lots and lots of hugs,
Rena
For all of you that feel like throwing in the towel...back off a bit, take a break, give yourself some down time. I am here every, single day (unless I am fishing of course) and I have found that taking a break or even just letting it go for a few hours can be of the greatest value to us. It seems that we can clear our heads and start out fresh and all that anger and frustration seems to dissipate...we can look at things from a different perspective and it is usually for our benefit.
I believe that sometimes it is the same for the doctors. Take Yorkie's doctor for example...he is totally stumped as to what is ailing Yorkie and has pretty much given up on helping her. That is the most frustrating situation to be in...BUT...Yorkie is going to take a break while she sells her house and I think it can only do some good by starting out fresh with a new doctor in a new state. We all become stagnant in our thinking if we are on the same subject constantly and tend to spin our wheels and not go anywhere if we don't step back and look at things from a different angle. It's somewhat the same as spinning your wheels on a patch of ice and unless you put the car in reverse and move the car off the ice..the wheels will continue to spin.
I wish the best for all of you that need to take a break but I also hope that you will stay in touch with us and not just disappear. The information that has been falling in my lap may continue to do so and because it is all new information, there may be something along the line that will help you too! Don't give up completely please...we will keep our eyes peeled for anything we think might help as well and if you are not here we will have a hard time passing it on to you.
I haven't given up and I will continue to fight but don't be surprised if I need a break occasionally...I hate that smell of burning rubber when my tires are spinning...no wait, that's not actually a smell...no one else smells it so it must be my brain! hehe (another thing to bring up to the neuro/psych I guess)
Lots and lots of hugs,
Rena
Way to go Rena girl, gather all the information for your battle!! I'm proud of you for standing up to all this and I'll start some research to add to yours.
Hugs
doni
Hugs
doni
WOW!!!!!!!!!
Welp! You have the article link I posted right? Says too that MS is always active. Keep this battle alive girl, with facts.
Hugs,
Shell
Welp! You have the article link I posted right? Says too that MS is always active. Keep this battle alive girl, with facts.
Hugs,
Shell
Ouch...didn't mean to smack you with a frying pan honey!! hehe I hope that this will be able to be used by more than just you and I...it is a critical piece of information that everyone seeking a diagnosis can add to their arsenal and I hope everyone does!
Lots of Hugs,
Rena
Lots of Hugs,
Rena
Rena,
This part really caught my attention:
"About 90% of MS lesions in the brain and
spinal cord don’t result in any symptoms at all. During all those periods
when you are experiencing no MS symptoms, the disease is working
“under the radar”, causing inflammation and damage to your nervous
system. You don’t realize that demyelination and axonal loss are
occurring because they are operating below the “clinical threshold”,
i.e. there are no obvious symptoms "
Just when I had relinquished my control issues and decided to trust my doctor 100% to do the right thing in the diagnosis process I get whacked up the side of the head with the proverbial frying pan!! Ok, You got my attention loud and clear here. That's me and my crazy lesions and black holes - all below the clinical threshold with not much in visible symptoms. What scares me is that tipping point they then go on and write about because I truly believe whatever this is in my brain has been there for quite a while.
Thanks for giving me the kick in the rump I needed and the ammunition as well for my next conversation with my neuro - so much for my one day of rest :-)
Be well,
Laura
This part really caught my attention:
"About 90% of MS lesions in the brain and
spinal cord don’t result in any symptoms at all. During all those periods
when you are experiencing no MS symptoms, the disease is working
“under the radar”, causing inflammation and damage to your nervous
system. You don’t realize that demyelination and axonal loss are
occurring because they are operating below the “clinical threshold”,
i.e. there are no obvious symptoms "
Just when I had relinquished my control issues and decided to trust my doctor 100% to do the right thing in the diagnosis process I get whacked up the side of the head with the proverbial frying pan!! Ok, You got my attention loud and clear here. That's me and my crazy lesions and black holes - all below the clinical threshold with not much in visible symptoms. What scares me is that tipping point they then go on and write about because I truly believe whatever this is in my brain has been there for quite a while.
Thanks for giving me the kick in the rump I needed and the ammunition as well for my next conversation with my neuro - so much for my one day of rest :-)
Be well,
Laura
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