http://www.mssociety.org.uk/docs/TreatmentsTranscript20062003.pdf
20th June 2003
Multiple Sclerosis Society
Speakers:
Dr John Zajicek
Prof. David Miller
Dr Alasdair Coles
William Ockenden:
My wife went on the trials for cannabis run by you, after being on the
trials for
a year she has really improved but the trials finished and since then
she has been in a terrible
state. We visited her consultant and he tried to prescribe Marinol
but has been blocked from
doing this by your self and also because the drug company want £12000
a year. Why did you
not have a follow up report on the patients once they have finished
the trials? It seems so
obvious that the benefits of which ever treatment my wife was receiving
were so great it makes it
even more frustrating to know there is something out there that is
of benefit to her and she
cannot get it.
Dr John Zajicek
Thanks for this. It hasn't been me who has been blocking access to these
drugs, I've been trying
to organise supplies for some time. We are hoping to get access via
a "named patient" basis,
which means that it will cost about £4 per capsule, and the doctor
prescribing the drug and the
patient will have to accept responsibility for any side effects. The
results from the study will come
out in september, and then the manufacturers will apply for a license.
If all goes well, these
drugs should be available from at least 2 different sources by early
2004.
Aaron
Are there next generation of drugs being developed
Dr John Zajicek
There are loads of new drugs being developed, and probably many drugs
already around that
may help. The trouble is that testing them requires monay and drug
companies often don't want
to pay for trials if anyone can make the drug (off-patent). If we want
more treatments we need to
be able to pay for more trials!
Steven Wallace:
I am on a waiting list & have read up on Copaxone, I should be on
it by
Christmas. Are there better alternatives??
Dr John Zajicek
Copaxone is one of the new immunosuppressive drugs, like beta-interferon,
although it works in
a different way. There are also older and newer drugs around, many
of which do not have a
license in this Country but are being used. My own view is that everyone's
MS is different, and
treatment for one person may not suit someone else. Someone with mild
disease may need a
milder drug, whereas someone with different stage disease may be suited
by something
stronger.
Mary Sarchese:
I started Copaxone Injections in March 2003 and since have noticed my
legs
have been increasingly weaker. Could this be a result of the Copaxone
treatment? If not, is it an
attack or just the progression of my disease. My neurologist told me
not to expect Copaxone
therapy to make me feel "better" but I was not expecting to get worse
at this rate. When does a
person decide that this may not be the correct treatment for them and
try something else?
Dr John Zajicek
It's really diifficult to know whether one of the new drugs is helping
someone, as we can't be sure
what they'd be like if they weren't taking it. Copaxone isn't associated
with increasing weakness
as far as I'm aware, so it could just be your underlying MS I'm afraid.
I'd have a chat with your
own neurologist or MS nurse.
Netty
Can you tell us anything about the Cannabinoid trials?
Dr John Zajicek
The main study I'm organising is the CAMS study, which is sponsored
by MRC. We're just
analysing the results form the first phase and hope to make things
public in september (it's
taking longer to do the analysis than we hoped).
Paul
Hello John, I've heard that Cannabis may modulate the immune system
in addition to providing
pain relief - what is your view on this?
Dr John Zajicek
Thanks Paul, we've done some work on the immune system and it seems
that in order to affect
the immune system you probably need to take huge doses, which would
cause major side
effects. We've got more results to analyse here. The more exciting
thing may be that
cannabinoids may help to protect nerve cells, so they may be helpful
in progressive disease.
We're designing trials to look at this at the moment.
Loz
Dr Zajicek, I know you are very involved in the Cannabis research. Can
you tell us whether the
research is indicating whether MS sufferers will benefit from this
on prescription? And if so, what
symptoms will benefit?
Dr John Zajicek
I'm afraid I don't know yet, you'll have to wait until the results become
available in september.
Our statisticians are getting nagged by me on a daily basis to speed
up their analysis!
Netty
Is the Cannabinoid trials to address the muscle spasm side of MS or the entire condition.
Dr John Zajicek
Mostly muscle stiffness (spasticity), but we're also looking at a range
of other symptoms
including bladder, pain, tremor, mood, general disability, well-being,
fatigue etc
Hamid Hosseini Hanvari:
I have had MS for 10 years. What is the latest drug that will help me?
Dr John Zajicek
This depends on what sort of MS you've got. The major types of drug
treatment are firstly for
relapses (steroids), secondly for symptoms (such as bladder trouble,
stiffness etc), and thirdly to
try and modify the course of the disease (mostly drugs affecting the
immune system such as
beta-interferon). We deperately need treatmenst for progressive disease,
and that's what I'm
working on at the moment.
Question
Dr Zajicek you are optimistic about finding treatments for MS in the
near future. I was confirmed
as having MS (PPMS) in 1991, and when I saw my Neurologist last month,
there didn't seem to
have been anything discovered that would treat PPMS in the past 12
years. Having been
confined to a wheelchair for 5 years, with a reducing ability to move
my right arm and left leg, I
had my first experience of depression earlier this year. I would dearly
like to believe a treatment
will be found, but I have heard similar words before, and although
there have been some better
news for RRMS, there seems to have been nothing for PPMS. How can you
justify your
optimism?
Dr John Zajicek
Unfortunately because PPMS affects only about 15% of people, trials
have lagged behind other
subgroups of MS. The CAMS study included people with PPMS, and most
people were
enthusiastic about taking part. I hope that the CAMS tsuy will be the
first of many trials for people
with progressive disease, whether primary or secondary. We can do these
trials now, we just
need the funding. I remain optimistic.....
Loz
If the trial results are positive (when they've finished being analysed!)
how long would it take for it
to become available on prescription for those patients who would benefit?
Dr John Zajicek
One company has already applied for a license. Whether anyone gets a
license depends on how
strong the results look. If everything goes well, medicines should
be available early next year.
Netty
What are your thoughts on some of the alternative therapys doing the
rounds at the
moment - in particular "Bee Venom Therapy" & electro magnetic therapy?
Dr John Zajicek
It's really difficult to comment on treatments that haven't been properly
tested. The problem with
MS is that it's so unpredictable, and people have been let down so
many times over the years
with new hopes for new drugs. We've got to be systematic about assessing
treatments.
Keith Opie:
What news and developments are there regarding Stem Cell therapies for
Primary
Progressive Multiple Sclerosis?
Dr John Zajicek
Stem cells should be very exciting, but once again, we need to work
carefully through all the
options. At the moment, the science of removing stem cells from the
blood (which could turn into
nerve cells and other cells to help in MS) isn't well understood. We
also don't know whether this
type of treatment may be better at an early stage, or whether it will
work in progressive disease.
There's a lot of work to do, but the field is moving fast.
Guest
Currently taking Oxbutynin for bladder and has been working well....apart
from Weds of this
week when I just want to empty my bladder about 30 times a day....what
can I do?
Dr John Zajicek
You firstly need to make sure you haven't got an infection, by asking
your GP to test your urine.
Then there are other options ranging from drugs to catheters, it's
best to talk these over with
your MS nurse or neurologist if you can as everyone's different.
Guest
Any advances in pain treatment?
Dr John Zajicek
We've been looking at cannabinoids for pain among other things, we'll
have to wait for the
results. Gabapentin (neurontin) is pretty good for MS related pain,
but you may need to go up to
very high doses (more than 3 grams/day)
Loz
I have had RRMS for 8 years, and the cognitive symptoms are amongst
the most troubling: poor
short-term memory, failure to recognise familiar objects, slow thinking,
confusion when
'overloaded'. Can you tell me what the likelihood is of this getting
worse, or staying at this level?
Dr John Zajicek
That's a tough one Loz. I'm afarid I really can't say here. You should
try to get access to a
neuropsychologist who may be able to help some of your symptoms
Guest
Thank you Dr Zajicek. I will try to track one down!
Samspeed
Hello John, I'm very interested in the cannabis trial going on. I've
been dealing with MS now for
two years. And live in the US where cannabis is definately illegal.
But I do feel that cannabis
helps my spasticity. Other than that I am on betaseron. And Baclofen
for the spasticity. My
nuerologist has clasified me as relapsing remitting. But I sometimes
feel that I am a in a
progressive state. I your cannabis trial proves to be affective will
be possibly be able to get
involved in the US.
Dr John Zajicek
It's a bit worrying that sometimes the whole world seems to waiting
for our results. It's important
we get the answer and hopefully everyone will benefit
Fireman Sam
Have you any idea when the Under the Tongue spray containing cannabis will be on prescription
Dr John Zajicek
This is being produced by a company called GW. They say they've got
good results and they've
applied for a license. When they get a license depends on how good
their results are, and no
one has independently seen them yet. I hope they're as good as they
claim; otherwise they may
be letting people down
Netty
Please could you tell me whether there is any reliable treatment for
severe fatigue, or is it just a
case of managing the symptoms?
Dr John Zajicek
There are 2 drugs used mostly for fatigue. On is amantadine, which has
been around for a long
time. The other is a newer drug called modafenil, which was created
to treat narcolepsy, the
sleeping disorder. Modafenil hasn't got a license for use in MS yet,
but people have been using it
Netty
Are you still looking for people to take part in the Cannabinoid trials,
and if so, what criteria do
you have to fulfill before being considered?
Dr John Zajicek
I'm afarid our present trial is almost over, and was fully recruited
last year. However, if we get
funding for more studies, then I hope we'll be testing these drugs
for progressive disease in the
near future
Connie
I have had MS for 2 years now. I have regular but fairly mild relapses
and am never without
some symtoms in between. Having said that I feel pretty well in myself
and am still mobile. My
Neurologist would like to get me on to a disease modifying drug but
I have some reservations
about this : I have an underactive throid and notice Avonex contra
- indicates with thyroid, I am
concerned about side effects particularly as I take a very holistic
view of health and try to follow a
healthy lifestyle - I don't much like the idea of suppressing the immune
system and finally
WHICH ONE?- Copaxone sounds less damaging but involves more injections.
Dr John Zajicek
There are a lot of questions there Connie. I'm a firm believer that
everyone is different, and each
person should be individually assessed to see what suits them. If you've
got mild disease, and
you're not keen on any treatment, then there may be a good case for
not taking anything other
than symptomatic treatments.
Josi
I have experienced loss of balance and giddyness recently, can i do anything to help this
Dr John Zajicek
Loss of balance and tremor are really difficult to treat. Maybe if you've
got relapsing MS this
could be part of a relapse and it might be worth trying steroids -
I'd ask your neurologist.
Josi
Are there any trials available to test Antegren?
Dr John Zajicek
David Miller is coming on a bit later, he's the best person to give you the info on antegren
Paul
What Phase are the trials at - just prior to Cannabis being prescribable
or whether they are in an
earlier stage?
Dr John Zajicek
The trial which I'm associated with (CAMS) is just analysing results
on 667 people across the
UK. Hopefully if the results are positive we'll have treatments licensed
by early next year
Netty
Many thanks for that - it's good to know that something out there may
help. At the moment
fatigue is really causing me problems in my daily life. I'll speak
to my Neurologist about Provigil.
Thanks again!
Josi
Campath-1H is this a new treatment available?
Dr John Zajicek
The person to nail about this is Alasdair Coles who's coming on next.
Laila
I have severe spasticity in my legs which is not controlled with Baclofen,
Tizanidine or Nabilone,
what should be my next option? Botox or Baclofen Pump or is there something
else?
Dr John Zajicek
That depends on whether your spasticity is generalised or just in one
or two muscles, and also
whether you're still walking. Baclofen pumps are fantastic in the right
people. If you're still
walking, they may make you too weak to walk. Bot tox can be useful,
but only last for a few
months and if the spasticity is widespread, it may not be suitable.
We're hoping that
cannabinoids may have some effect on spasticity too
Josi
The (cams) trial do you feel positive about the outcome of the results?
Dr John Zajicek
Afraid I can't say yet
Liz Kingsbury:
I use steroids every day to control my MS. Every time I try to reduce
the dosage,
my MS returns. Is there anything else I could take/eat to try and control
the worse effects of MS.
Currently I have problems walking without sticks, fatigue and bladder
control.
Dr John Zajicek
There are a few people who really seem to be dependent on steroids,
which is difficult to
understand. The major trouble with them is that they can thin the bones
and have other longterm
effects. What else you use depends on what the major symptoms are,
so it's best to chat
this over with your MS nurse or neurologist
Julie
When is the under tongue cannabis spray for pain relief likely to become
generally available to
PWMS and who would prescribe it - GPs or hospital consultants?
Dr John Zajicek
Hopefully early next year (see above) - it's going to be reviewed by
NICE..........watch this
space....
Peter
Why is MS not seen in equator regions?
Dr John Zajicek
Good question. It is present, but at much lower levels. There's almost
certainly a complicated
interaction between genetics and environment going on here. It looks
like certain genes are
more associated with MS, and then if you've got these genes, then something
in the environment
triggers it - we don't know what!
Question
As Nabilone has not helped with my spasticity, will it follow that the
cannabis treatments coming
out will also have the same effect?
Dr John Zajicek
People have certainly told me that they haven't been helped by nabilone,
but have found benefit
from the medicine in the CAMS study. I don't yet know what they were
taking, so it's difficult to
answer this at the moment
Josi
You mention that you were optimistic about new treatment for the near
future have you anything
in mind that we could keep an eye on?
Dr John Zajicek
Well, I'm keen to give people with progressive disease more of a chnace
to try drugs that may
slow things down, so there are a handful of things that may work here,
including cannabinoids.
The real problem is that any studies in progressive disease will atke
a long time to get answers
from, so we need to work on netter ways (and less expensive ways) of
getting answers
Samspeed
Dr Zajicek, thanks for your time and response.
Laila
Thanks to Dr Zajicek for his hour - we now welcome Prof David Miller.
Prof Miller will answer
questions until 4pm
Paul
Do you think that viruses like Epstein-Barr virus or Human Herpes Virus-6
have got anything to
do with the cause of MS?
Prof David Miller
They are not the cause but a number of viral infections may in some
way act as triggers to the
process or relapses
Jo_greendragon
Why is it so difficult to get Drs to take MS symptoms seriously and
why is it so difficult to get
testing for MS under the NHS?
Prof David Miller
It shouldn't be like this; there is a shortage of neurologist which
is slowly being rectified
less
Question
In the UK we are told that the benefits of the currently available disease
modifying drugs are
unclear. In that light is it sensible to wait until Antegren becomes
available and what times scale
do you see that being in?
Prof David Miller
The present treatments are effective for some people - it really depends
on the type of MS. We
dont know much about their long term effect though
Carolyn Cusack:
59 Yrs old, diagnosed in 1980 with no further trouble until 1998; became
secondary. I have over the past 5 years been prescribed Beta-interferon,
Avonex and Rebif; all
of which I had side effects from. At the moment I have to take Depakine
to control my bladder; a
light pain killer to help control the burning sensation on the skin
of my right leg; I have a healthy
diet; but am less active and so am putting on weight. I see a physiotherapist
3 times a week for
regular massage and exercises. Where do I go from here? What else should
I do to help myself?
What new ideas are there?
Prof David Miller
You already seem to be managing your condition well. A neurorehabiloitation
assessment with a
multidisciplinary team can be helpful
Guest
What would you say explains the huge descrepancy in the number of people
with MS who get
disease modifying in the UK versus France, Germany and Italy?
Prof David Miller
Probably main factor is that until recently the treatments were less available in NHS
Paul Wilkes:
Why is there no treatment for PPMS; I feel very frustrated all I get
told is that there
is nothing they can do. When I phone for any info on research I'm told
that they are not looking at
this, as they have no guide. Surely if they were to treat this they
could gauge it by the fact that
the sufferer is not getting any worse. Can you also help with any other
information on managing
my MS; all I have been given to take were anti depressants, which I
don't want to take. When I
asked about this the answer I got was we always give this its' called
(A and A). I find this very
unsettling that the medical profession can be so blasé about
this type of drug. People like me
need help, not doping up on drugs that won't make any difference to
us.
Prof David Miller
It is true there have been fewer trials in this form of MS though there
was a large copaxone trial
recently but unfortunately it was not effective. Damage to the nerve
fibres seems to be important
in progressive MS and there is alot of work at present trying to understand
what causes that
damage and how to prevent it
Julie
Having been given three different diagnoses of the 3 main types by 3
different neurologists, if
treatment depends on the type, where does that leave me or are there
any which might cover
the full spectrum in the pipeline?
Prof David Miller
It can be hard to classify Ms sometimes. Essentially, the existing disease
modifying treatments
are for ambulant people having recurrent relapses
Sara:
I'm 25 and have had MS since 2001. Thankfully, due to beta-inferon,
relapses have been
few. However, an ongoing problem for me is fatigue. As this aspect
of MS is not visible, people
often accuse me of being lazy. This is very hard to deal with. What
treatments (apart from
amantadine and b12 injections), would help manage the fatigue better?
Prof David Miller
Managing day-to-day fatigue through careful planning of activities can
help - occupational
therapists can provide fatigue management advice. Modafinil - a treatment
normally used for
narcolepsy, has been shown to reduce MS-related fatigue in short-term
studies but we don’t
know about its long-term effect
Less
What is you advice today to someone with only sensory symptoms who technically
satisfies the
UK guidelines? Would you say that they are "playing russian roulette"
with their health if they do
not start taking disease modifying drugs as it has been said elsewhere?
Especially in the light of
the lack of success of drugs to treat progressive forms of MS.
Prof David Miller
This is difficult because we don’t know what the long-term outcome will
be with or without
treatment. In general though the outlook is better if there are only
sensory symptoms and people
quite often decide to wait and see
Peter
Is the incidence and prevalence if MS increasing or decreasing over the last 20-25 years?
Prof David Miller
Prevalence has increased because of better diagnosis and long term care,
but incidence
probably hasn’t changed
Less
What is the timescale for the current AFFIRM phase III trial into Antegren?
If it were successful
how long does it typically take to get regulatory approval after a
phase III trial has finished?
Prof David Miller
Two-year trial due to end late 2004. after that hard to say, depends
on results, but if positive it still
often takes a year or so for approval/licensing etc
Sue_uk
I had first prob last April with optic neuritis lasted 8 wks sight in
left eye went, ive read about
alternative therepy and follow the Swank low fat diet although i dont
understand about fats and
quantities you should have etc. Have not had a relapse since then yet
but have dizzy spells etc
and had permanent floaters in eyes since attack get tingly legs but
wondered if low fat diet may
be helping. Also just got some Sphingolin Myelin Basic Protein from
America and taking 2
capsules a day, what is your view on this?
Prof David Miller
Some evidence that linoleic acid may decrease relapses a little - it is in sunflower oil, safflower oil
AP35
Have you any thoughts on the use of Low Dose Naltrexone for MS? It seems
to boost immune
function apparantly.
Prof David Miller
No useful data to advise on this that i know of
Peter
Is the epidemiologic distribution of MS related to vitamin D levels,
seasonal changes and
sunlight?
Prof David Miller
This is one theory of the distribution but like others it doesn’t really
hold up. MS is most common
in temperate latitudes but the reasons why are unclear
Guest
I have read that there are greater numbers of MS sufferers living in
Scotland. Is this true and if
so why is that the case?
Prof David Miller
Yes and 1.5 times more common than England. Some evidence that related
to greater genetic
susceptibility in the population
Less
If you "wait and see" with respect to drugs isn't it too late once you
have seen or are the
treatments able to reverse damage that has already occurred?
Prof David Miller
The existing treatment don’t reverse damage, they try to prevent new
damage. There isn’t a clear
answer to your question because we don’t know what there long term
effect is
Natalie28
Do you know where I may obtain information about suffering from both
Dystonia and multiple
Sclerosis, as is the case with me? Also, is it possible for me to have
been mis-diagnosed and
indeed be suffering from Hughes Syndrome instead?
Prof David Miller
MS Society is good place to start. There is a simple blood test for Hughes syndrome
Laila
Our info team are available on the phone weekdays 10am-3pm - tel 020 8438 0799
Less
What are your thoughts on research into using "virtual patients" as
placebo group to enable
further drug tests to be performed without depriving patients of treatment?
Prof David Miller
This is a good idea in principle but it hasn’t yet been tested to show it is reliable
Judith Wilson:
What progress is being made with remyelination? I'm aware that this
is a relatively
new area and has a long way to go, but it does sound exciting and I'm
sure we are all hopeful
that something positive will arise. My son was diagnosed with RRMS
three years ago, at the age
of nineteen.
Prof David Miller
This is an exciting area though still in research. Researchers are trying
to understand how
myelin forming cells or their precursors can be activated to produce
myelin. There is also interest
in whether precursor stem cells may help with remyelination but more
needs to learnt how to
make them get to the right place and then work properly
Guest
Is there anything i can do for short-term memory loss?
Prof David Miller
Keep notes, lists to plan the day
Jenny Lundquist:
I am doing some research into MS and I'm currently looking at the Antegren
trial. How is the Antegren trial progressing? There were some side
affects reported in the phase
II, have they been reported in phase III? And When are we likely to
have the results - interim and
final?
Prof David Miller
About half way through phase 3 but no results available yet (because
it is a blinded study) study
finishes late 2004
Sue_uk
What is the best treatments for newly diagnosed?
Prof David Miller
Depends on what is happening with the MS. Often no specific treatments needed
Guest
Is MS really as complicated as it appears to be, or do doctor's understand
the fundamentals of
the disease and is it only complicated when ms suffers read about and
don't understand a thing
they are reading.
Prof David Miller
It is quite complex. MS Society has excellent information sources. Ms
nurses and neurologist
can also give much useful information
Jo_greendragon
Can anything be done to improve the awareness of GP's and other specialists
encountering the
symptoms of MS?
Prof David Miller
There is a fair amount of educational material for doctors but because
it is not VERY common it
often is best to be seeing a neurologist who is used to the disease
AP35
Do you think Antegren is as harsh a treatment as the Beta Interferons?
Does it work in the same
way?
Prof David Miller
Antegren is still being tested - too early to say what its effects will
be. It has a different action
from beta interferon
Ogbecki:
Do you expect any new treatment for secondary MS in the near future?
I was turned
down for interferon because I am in a wheelchair. I feel if I had been
given treatment early in my
illness I would not be in a wheelchair today. Is there ever going to
be a treatment for people like
me. Also could you tell me what you would recommend for intention tremer
not clonazepan?
Prof David Miller
Progressive MS appears related to loss of nerve fibres themselves; so
a lot of work is going on to
find out how to protect the nerve fibres though there isn’t an effective
treatment yet
Guest
Is age of commencement of symptoms significant and does it tend to affect
the progression of
the MS?
Prof David Miller
People with an older age on onset (>40) are more likely to have progressive
rather than
relapsing remitting onset but there are no absolute rules
Sue_uk
Do you think its a genetic illness passed down through families, as
I was adopted so I do not
know my family history
Prof David Miller
Genetic susceptibility plays a part. whereas population frequency is
1 in 800 it is 1 in 50 for first
degree biological relative (sibling, child)
John M
Haven't migration studies, more or less, knocked genetic susceptibility on the head?
Prof David Miller
No, indeed some people think that some of the distribution of Ms in
the world is related to genetic
factors. But it is complex and there are likely environmental factors
as well
John M
Thank you
Daniela Giulianelli
I'm 55, female and was diagnosed PPMS a year ago. I believe I had the
condition as a child. I heard about 3 weeks ago - around 10 am on Radio
4 that a certain
professor Syngar (not sure of spelling) - in the University of Ohio
US. He trains muscles - small
muscles of people whose nerve endings are damaged - to exercise to
the brain only - Has
anyone heard of this weird and wonderful idea? I try to exercise every
day on the exercise bike
10 mins. I don't know if this is vexing my leg muscles too much and
letting the lactic acid further
damage muscles/nerve endings?
Prof David Miller
Exercise is a good thing providing one doesn’t get too tired. the brain
may adapt to damage in
MS and this may help recovery - a technique called functional MRI shows
this capacity
John M
Are there any 'blue sky' theories on the cause of MS - which you can
take half (or less)
seriously?
Prof David Miller
Main ideas are that genetic susceptibility; environmental factors and
the immune system all play
a part
Peter
Are people with blue eyes more susceptable to MS than those with brown or black eyes?
Prof David Miller
No!
Kielyn
I have had rrms for 8yrs now. I have been on rebiff since 1999.My walking
has slowly got worse
100 yrds max,and fatique which I am not taking anything for.Could it
be progressing to spms this
has been getting worse for over a year now.thanks
Prof David Miller
SPMS can develop while on BIFN but the only way to be sure is to see your neurologist
Eileen
I understand that one area you are involved in is about knowing how
the disease will progress.
Could you please say how far this has gone
Prof David Miller
Still limited progress. Very early MRI gives some indication but isn’t
enough. There are some
newer methods that may be more useful in future
Peter
Why is MS spasticity more common in the legs than arms?
Prof David Miller
The nerve fibres have longer to run through spinal cord to legs - this may be a factor
Samspeed
Could you elaberate on the antegren trial and what it intales.
Prof David Miller
Antegren blocks white blood cells crossing from the blood in to the
brain. It is thought that these
cells may trigger MS lesions. A 6-month study showed promising results
but long term trials are
needed and are now in progress
AP35
What is the likelihood that the Antegren will finish early due to favourable result?
Prof David Miller
Unlikely because one needs to know the longer term benefits and side
effects before being
confident about a new treatment
Jo_greendragon
I believe that my grandmother may have had MS, although she was never
diagnosed. I was her
carer as a child and her symptoms were virtually identical to how mine
are now and she became
ill in her early forties too. She always had relapsing and remitting
symptoms even up to the end
of her life at 76. Does this mean that my pattern is likely to be similar
to hers?
Prof David Miller
No - it can be different in different family members
Guest
What are your views on the risk sharing scheme as not all people who
fit the criterea are getting
these therapies
Prof David Miller
People should be able to get the treatment if they are eligible as that
is the purpose of the
scheme
Funonfriday
I keep hearing about a new 30-minute IV that will be released from the
Drug admin. to illeviate
the 3x/wk injections, can someone provide info on this
Prof David Miller
Don't know about this
Samspeed
Could having scoliosis add to the problems that I have with MS.
Prof David Miller
Shouldnt do unless the scoliosis is severe in its own right
Peter
Are Magnesium supplements useful for muscle spasticity not responding
to usual muscle
relaxants?
Prof David Miller
No experience of this
AP35
Have any side effects been reported regularly from the Antegren trial
participants? Will Antegren
only be prescribed for RRMS?
Prof David Miller
The trials are in relapsing MS (which can be RR or SPO but must be relapses).
The 6 month trial
reported occasional allergic reactions (it is given IV)
Less
What is the relationship between sativex and the current cannabis trials?
Prof David Miller
I dont know about this
Lucy Badger:
My mother has MS and severe deterioration with her eyesight. The doctors
aren't
sure what to do because her eyes aren't the problem; her optic nerve
was affected after a period
of optic-neuritis. Doctors feel it is heat related but it is gradually
becoming worse even though
her other MS symptoms are easing slightly. She is currently on Beta-interferon
and has recently
had a weeklong dose of steroids. What do you think about the loss of
eyesight and do you know
of any developments in this area that could help because the neurologists
in our area (Dorset)
don't have any.
Prof David Miller
It is unusual to develop permanent or progressive visual loss in MS
but it can happen. Important
to see an ophthalmologist to be sure there isn’t another cause. If
it is MS, there isn’t a specific
treatment
Less
Is there a ballpark figure for the likely cost of Antegren or is it
a commercial decision that will be
taken at the time by the drug companies?
Prof David Miller
I have no idea - companies decide these matter (we still have to wait
to see the phase 3 trial
results before we know whether it is likely to become available)
Jenny Fielding
I recently read an article regarding the 'dangers' of aspartame, which
is used as a
sugar substitute in virtually all diet drinks. The article indicated
that it was particularly bad for
people suffering with MS and also diabetes. What are your views?
Prof David Miller
Nothing I know of about its effect on MS
Robbo
I understand that most people with MS are affected by heat, I am the
opposite, I get far more
pain and stiffness when it's cold. Do you know why heat and cold affects
MS?
Prof David Miller
Heat can temporarily block conduction in nerve fibres that already lost
their myelin. It is less
clear why some people feel worse in cold. may relate to pre-existing
stiffness or spasticity
Sue
If i was 37 when got optic neuritis and recovered sight does it mean
its relapsing remitting or cld
it be progressive? is it normally progressive when u get at this age
Prof David Miller
Just optic neuritis was it first episoed?
Eddiep
Sorry I missed the earlier chat, but is antegren likely to have any
benefit for primary progressive
suffers?
Prof David Miller
It hasn’t been tested so don’t know. I would guess less likely to help
as it suppresses brain
inflammation which seems more important in RR than PP MS
Sue
Yes it was nothing before no numbness tingling in legs sometimes
Prof David Miller
Onset with optic neuritis is RR type - it isn’t progressive if no progressive
increase in symptoms
for more than 6 months
Sue
MRI was positive with few patches of demylination
Prof David Miller
Some people just have optic neuritis and never develop MS. If not sure
about tjis best to see
neurologists
Joy Grainger:
Yesterday I saw a neurologist who did some tests i.e. hands, eyes; feet;
when the
stick was dragged along the soles of my feet he got no response from
me. I suffer from all the
symptoms of MS. The Dr said I need an MRI brain scan to confirm MS.
18 yrs ago I had a
lumbar puncture; it's likely that I had MS at this time and did not
shown enough signs, my
question is: Can Dr's really tell by doing these test's; I personally
think I have it and have had it
for some time but my GP say's no; is he trying to be kind? I can accept
having MS, it's the not
knowing what is wrong with me?
Prof David Miller
It is when there is clinical uncertainty that the tests (MRI, lumbar
puncture) can be most useful.
They don’t make a diagnosis themselves but put together with symptoms
and signs can help
Monia Rihane:
I'm a journalist from Tunisia, I'm black, a mother of 2 children. My
MS diagnosis
was in 1999 at that time my EDSS was 1 but it's now reached 3,5. I've
been treated with rebif 44
for the last 2 years, but though it's known for its good effects on
the disease, I'm scared to see
my EDSS has increased. Please tell me more about the evolution of MS
and is there some ways
to prevent it?
Prof David Miller
EDSS isn’t very helpful, what is more important is how you feel on treatment
compared to before -
relapses, other symptoms etc. In fact it is hard to judge response
to treatment because Ms itself
is so variable. It is best to discuss these questions with your neurologist
Laila
Dr Coles is now joining us to answer the questions until 5pm
Sue
Dr Coles do you think that diet plays a part in managing ms i.e. Swank
diet what are your views
on the results of that study?
Dr Alasdair Coles
The evidence is that diets do not have a specific impact on MS; but
eating healthily is always a
good thing.
Angela Dunn:
I am a patient of Professor Miller's & he has treated me with Mitoxantrone
in the
past. Would that rule me out for Campath 1H? I am aged 24 and have
been diagnosed with
Severe/Aggressive MS 3yrs ago.
Dr Alasdair Coles
Dear Angela, previous treatment with Mitoxantrone is not a complete
contraindication to
Campath, but is a pretty strong one. That is to say, if mitoxantrone
has not helped you, I doubt
campath will
AP35
What would use choose as a spasticity treatment when Baclofen, Tizanidine
and Nabilone (all at
once!) are failing? Have severe leg spasticity and extensor spasms.
Still walking but only just
and badly.
Dr Alasdair Coles
Dantrolene is an old drug that sometimes is helpful. If that is not
useful it might be a good idea to
see an expert on spasticity to discuss more invasive measures.
Less
Could you briefly explain the status of campath for MS treatment please?
In particular who is it
most and least suitable for?
Dr Alasdair Coles
Hi. Campath is not licensed as a treatment for MS. It is only being
used in a clinical trial. It is
most effective (like all MS treatments) on those with early disease
in the relapsing-remitting
phase.
Sue
Why in America do they treat newly diagnosed immediately saying early
treatment is best but in
England you have to have 2 relapses or more?
Dr Alasdair Coles
A good question. There is evidence that treating people after the first
episode with interferon
increases the time to the second attack, but does not alter disability
eventually. In the US, this is
thought a good thing. In the UK this is thought too little a results
for the expense.
John Parker:
I am a 49 year old male from South Wales, diagnosed with SPMS in October
2000.
I would like to hear the professionals' views of the possibility of
a stem cell based cure for MS in
the future. My view is that this direction is promising, but a cell-based
cure may be 10 years
away or more. What do you think? I also get the impression that drugs
which may affect MS are
being derived from many existing drugs, which were designed for other
purposes but have been
found to be beneficial in some forms of MS. The Amantadine (Symmetrel)
anti-viral and the
Campath (Alemtuzumab) anti leukemia drugs are examples, which spring
to mind.
Dr Alasdair Coles
I would agree with you, although Professor Scolding (Bristol University)
thinks we may treat the
first person with MS using stem cells within the next two years. I
think this is optimistic myself. It
is not yet clear what sort of cells might be needed and how they should
be given. The easiest
cells to get hold of are the primitive oligodendrocytes that grow in
the nose. The most versatile
cells are those from the brains of fetuses that have been aborted,
although many people have
ethical reservations about using such cells. A recent scientific report
about mice says that stem
cells injected into the bloodstream find their way by themselves into
the brain and will repair
damage there. This would be wonderful if it worked in people.
Sue
I got dxd last year at 37 only had one big attack of Optic neuritis
and other small symptoms
would i be suitable for Campeth?
Dr Alasdair Coles
Dear Sue, you should certainly discuss treatments with your neurologist
and being on the
Campath trial would be one option.
Robbo
If campath is made available, would it replace interferons?
Dr Alasdair Coles
Well, it all depends on whether it is more effective... it is certainly
cheaper than the interferons,
but more toxic.
Claire Mould:
Very recently diagnosed (2 weeks ago) with RRMS. I am in 'relapse' stage
at the
mo and have been put on a 3 week course of steroids (prednisolone 5mg).
These seem to be
helping, however, I have started to find it difficult to get a full
set of air into my lungs and have to
breathe very hard to achieve this, I have also been getting what I
can describe as a 'wooden
head' causing immense pressure behind my eyes; feels like my brain
is made of cotton wool and
I find it difficult to concentrate at times. What are these symptoms
of and if so is there anything I
can do/take to help?
Dr Alasdair Coles
Claire, taking your symptoms in turn.. The breathing difficulty may
mean that the muscles in your
chest, that move the chest wall up and down, are not as strong as they
should be. If this is still a
problem for you, I would recommend you get in touch with your doctor
today to say this is a
concern of yours. Secondly, headaches can be a feature of MS relapses.
There is no specific
treatment for them. Regular headache pills may help. If not, you get
discuss with your doctor
trying pills like gabapentin or amitryptilline which are useful when
pain is coming from irritated
nerves. Lastly, people with MS often feel woolly headed in a relapse.
This almost always clears
in time so do not worry about it. No tablets will help though.
AP35
What are the more invasive procedures for spasticity you refer to? Do
you mean severing
tendons or nerves in surgery?
Dr Alasdair Coles
Those, and also the injection of baclofen or other chemicals into the spinal fluid.
Sue
Have you heard of Sphingolin Myelin basic protein and do u think any benefit to taking it?
Dr Alasdair Coles
Dear Sue, yes I have heard of this. And my advice would be not to take
it. There has been a
large trial of taking myelin orally and it was of no benefit.
Nalacat
I saw early MS defined as within 3 years. But I've had it now for 10
years but no disability. 2
relapses in that time. Currently on Copaxone. The docs say I'm still
early - that length with MS
does not equal progression. So why only use CAMPATH for people within
3 years?
Dr Alasdair Coles
A good question. There is no standard definition of what "early" MS
means. We have chosen
three years for our trial because this is definitely early. It does
not mean that Campath will not
benefit people with longer disease in the future.
Rob
Is there a connection btw hughes syndrome & MS, as last week on
City Hospital they said that
25% of people diagnosed with MS actually have hughes syndrome.
Dr Alasdair Coles
Very controversial! My own view is that Hughe's syndrome does not cause
a separate disease
that looks like MS, but rather regular MS is coinciding with the blood
abnormalities that are seen
with Hughes' syndrome.. In other words I do not think that 25% of people
with MS have been
misdiagnosied.
Karrie
I have had MS for ten months and I am awaiting an assessment for Beta
interferon. I am
interested that you say Campath is recommended for people during the
early disease stages,
does this mean how long someone has had MS or how badly affected by
MS a person is.
Dr Alasdair Coles
Dear Karrie, I did not say "recommended".... our trial is for such people.
The timing is three years
from the first attack of MS and people must not be too disabled.
Annie
How are your trials going with regard to Campath1H?
Dr Alasdair Coles
Well thanks.. but still plenty of room for suitable volunteers.
Julian Low:
I am a long time sufferer with MS and recently heard about Low Dose
Naltrexone
and have just started using it. What advice or knowledge do you have
of this treatment? It is
immediately attractive because at the very least it promises to halt
the progression of this
disease.
Dr Alasdair Coles
Naltrexone blocks the body’s receptors for opiates. The body’s own opiates
are the “endorphins”
that you may have heard of. But I am sure you will have heard of heroin,
which acts using these
receptors. Naltrexone is licensed for use amongst heroin addicts. It
is true that, in theory, a low
dose of naltrexone may impact on the immune system; but there is no
evidence at all that it
helps people with multiple sclerosis. I do not think anyone should
try it outside of a clinical trial.
Laila
If anyone would like to volunteer please contact our research team for
info on getting involved in
Dr Coles' trial email researchadmin@mssociety.org.uk
Guest
Is campath an aggressive type of treatment to have for newly diagnosed?
I’m glad you answered
questions about woolly heads and headaches i felt really spaced out
when I had my attack like i
was going mad almost. I also get a problem with breathing frequently
sometimes can last weeks
feels like I cannot get enough air into my lungs is this ms causing
this?
Dr Alasdair Coles
Campath is certainly a very powerful treatment and starting it (in a
trial) needs careful thought
and discussion. Your breathlessness might be caused by MS, although
obviously there are
many other possible causes. I would recommend you get this checked
out.
Elaine Murphy:
I haven't had an attack for a year now. I have been offered, and am
entitled to,
treatment but am worried that if I start the treatment without having
another severely disabling
attack it may bring on the MS earlier than if I didn't have treatment
at all. I am only taking
Evening Primrose oil capsules at the moment and am beginning to think,
'Do I really have MS?'
What do you think?
Dr Alasdair Coles
Dear Elaine, I cannot help decide if you have multiple sclerosis. But
if you are concerned that
you do not MS, my advice would be to get this matter sorted out first
before you think of
treatment. As to the treatment.. I am sure that it will not bring on
an attack and I would not hold
back from starting it for that reason.
AP35
Regarding Low Dose Naltrexone and message from Julian Low, LDN is such
a cheap drug that
no pharma Co will fund a trial for MS treatment. Are there any plans
you know of for trials over
here?
Dr Alasdair Coles
A fair point, that is often a problem. I know of no such trials.
Mike Crowther
My wife has secondary progressive MS. As you can imagine she is severely
disabled, wheelchair, catheter, no use of left arm and poor use of
right arm etc. She has had a
phalamotomy and subsequently an intrecetal Baclofen pump fitted, at
the excellent Walton
Centre. This gave improvements in the symptoms but there appears to
be neither treatment nor
any immediate chance of treatment for this form of MS. I suppose the
question is what kind of
time scale is involved?
Dr Alasdair Coles
What your wife needs is a treatment that will remyelinate the nerves
that have been
demyelinated. This is not yet routinely available. At Yale University,
three patients have received
a transplant of cells (Schwann cells) from leg nerves into the brain
to see if they will repair
damage from multiple sclerosis. We are awaiting the results. But there
is much research looking
into all sorts of other ways to remyelinate, the most promising being
the injection of stem cells
into the brain. Professor Scolding (Bristol University) thinks we may
treat the first person with MS
using stem cells within the next two years. I think this is optimistic
myself.
Roz
I suffer from severe pain in my eyes which effect my ability to read
books, watch TV or use my
computer for any length of time. Is there any drugs I could take to
help me? I have tried various
painkillers with no effect.
Dr Alasdair Coles
Dear Roz, a tricky one. First have you tried using dark glasses (odd
I know, but sometimes
helps!). Some people find ibuporfen/neurofen helpful. And lastly there
is a research drug called
3,4-DAP that some say helps, although no person I have given it to
would agree!
AP35
I recently discovered that Antegren is also in trials for Colitis. Are
you aware of any MS
connections with Colitis. I have no family history of MS but my mother
has Colitis (with a history
of thyroid disease in her family tree)...coincidence?
Dr Alasdair Coles
A fascinating issue. There have been several studies looking at the
relationship of MS with other
autoimmune diseases... One has shown a positive association with colitis.
Three others have
not! So take your pick!
Ann Durrant:
I was diagnosed with PPMS at the age of 53. But when in my early 20's
and 30's, I
spent time in a mental hospital, as some sort of depressive. I was
having hallucinations and
receiving electric shocks just from touching wood or paper (obviously
non-conductors). These
episodes only lasted a few weeks and then I would be back to normal
(having to hold my head
up high and ignore comments, such as (she's not all there). I went
on to have 3 wonderful
children, gain half a degree from the O.U. (too tired to carry on)
and then was diagnosed with
MS (well, of course I wasn't all there at times)- but I have learned
to laugh about the whole
situation. I just want to know has a cure been discovered yet?
Dr Alasdair Coles
Dear Ann, thanks for telling us about those experiences. It is interesting
to speculate whether
those early episodes, which took you to a mental hospital, may have,
in fact, been due to
multiple sclerosis. You may remember that Jaqueline du Pre had some
really quite bizarre
behaviour before she had her first physical relapse from multiple sclerosis.
Congratulations on
your (near) degree! And the cure… !!
Roz
Are there any known side effects with the drug 3,4DAP?
Dr Alasdair Coles
Yes, unfortunately, tingling in the fingers and toes and an increased risk of epileptic seizures.
Less
Are there any medical conditions for which stem cell treatment is currently
a good cure? I ask, as
I am worried that people might have false hope.
Dr Alasdair Coles
I agree; we have to be realistic. The answer is no. Stem cells are used
in Parkinson's disease
and have just been started in Huntingon's disease. But we cannot say
they are definitely useful
in either of these diseases.
Sue
Dr Alasdair thanks very much you information has been very appreciated and useful today.
Rachel
I have been taking Amantadine to help reduce fatigue however, unfortunately
it has had no
affect. Do you know of any alternative medication I could try?
Dr Alasdair Coles
Tricky. A drug that is attracting a lot of attention is modafanil (Provigil).
But this is not licensed
yet for treating MS fatigue (nor is amantadine!). You might want to
discuss using it with your
neurologist.
Less
I would like to concur. It is extremely refreshing to hear someone answer
questions
straightforwardly. Thank you
Rachel
Thank you
Susan Rollings:
My partner is letting the possibility of getting MS consume our lives
and I'm
wondering if he has valid concerns. His grandfather had MS and as well
his father who is in the
late stages of the disease. As you can imagine this is a concern for
both my boyfriend and
myself. We have heard that it is hereditary but that it usually skips
a generation. We have also
been told that hereditary is not an issue it has more to do with environment.
What are your
opinions regarding this? Do you believe we should be concerned and
prepare for the worst. (We
are both 28 years of age) Also, what is your opinion on the tests that
you can have to tell you if
you do have MS? how reliable do you believe them to be?
Dr Alasdair Coles
Dear Susan, this is such a delicate area that I am loathe to hand out
advice in this anonymous
way. But there are a few things I can say. If one parent is affected
by MS, there is an increased
risk that a child will be affected by the disease BUT THE INCREASE
IS NOT GREAT. So it goes
from the normal risk (say 0.2%) to 2-3%.. It would be very hard to
factor in the impact of having
other family members affected. I always think of the joy my children
give me when I discuss this
with people... and try to be as encouraging as professionalism will
allow!
Dele Carden:
Whilst I was pregnant I really noticed an improvement in my condition.
I have
SPMS and if I were younger I would love to be permanently pregnant!!
If this is a hormonal
issue, why hasn't research developed some form of HRT that may help?
Dr Alasdair Coles
Dear Carden, you are right up to date. There is stacks of research on
just this issue.. nothing
quite ready to prescribe though.
Less
If you had to guess, what would say the next drug for MS treatment that
is licensed in the UK will
be and when?
Dr Alasdair Coles
Antegren... and in 2007 or 2008
Annie
Have you any comments regarding the Cari Loder treatment. Which is a
combo of amino acid,
antidepressant and injections of B12
Dr Alasdair Coles
Dear Annie, it has been put ot the test and found not helpful.
Netty
I apologise if this has been asked before, but what are the criteria
that need to be fulfilled to be
considered for the Campath trials? I have had RRMS for 6 years.
Dr Alasdair Coles
Dear Netty, the MS website has a general review of our trial which you
can look at... but briefly
people have to have had RR MS for less than three years and still be
walking independently.
Laila
Any volunteers for the trial can email our research team - researchadmin@mssociety.org.uk
Peter
Do you know any countries in the world where MS is unknown?
Dr Alasdair Coles
Countries... no, but races.. yes. MS has not been seen in Inuit Indian,
and Eskimos.. and is very
very rarely seen in black Africans
Netty
Thank you
Robert Swinn:
Should a greater stressing of the need to manage the illness be given
at the point
of diagnosing MS? Awareness of the need to focus on treatment of MS
at the early inflammatory
stage is commendable, but poor management of patient awareness in the
early stages is one I
feel I suffered from. I urge neurologists to push newly diagnosed patients
into the pursuit of
managed care promptly, and to be aware of the need to suppress the
autoimmune reactivity. I
went 3 years before a spinal tap and clinical diagnosis led to my first
steroid treatment, and a RR
diagnosis, and after further treatment I've now been told my MS has
progressed to a nerve cell
death phase, which is untreatable. My management is improving, but
being a researcher I'm
aware that research teams can let down sufferers as they focus on chasing
funding and
establishing programmes. I wish the trial the greatest success. But
have to pin my hopes on
present and future research that will help the demyelination.
Dr Alasdair Coles
Hear! Hear! I agree... and apologise for our failings.
AP35
Will it really take that long to get Antegren on the shelves? The trial ends 2004.
Dr Alasdair Coles
I would guess so... even the most expedited drugs take a further 1-2
years to licensing and I
have a feeling that there will be some significant issues to resolve
around the LONG TERM
efficacy of Antegren. I may e wrong...
Less
In the context of pregnancy helping alleviate some symptoms has there
been any research on
the effect of being on the pill?
Dr Alasdair Coles
A little, and it does not seem to help. The trouble is the pill does not exactly mimic pregnancy.
AP35
Oh dear, I feel the NICE word coming on! Thank you for all your helpful guidance
Roberta Ferreira:
I'm 24 and for about 8 years I've suffered from MS....At this present
moment
I'm in a relapse. I'm numb all over my arms going down to my waist
as well. I just don't know
what to do. Sometimes I take alprazolam (which makes me sleep) but
the symptoms just don't
go away. What kind of medicine or treatment can I have for numbness?
Dr Alasdair Coles
There are a range of treatments from drugs also used in epilepsy (eg
carbamazepine) or
depression (eg amitripylline). My personal favourite is a drug called
Gabapentin. You could
discuss taking this with your GP or neurologist.
Dr Alasdair Coles
These drugs do not improve sensation but they take away the nasty burning
that sometimes
comes with numbness
Peter
When was the first MS case described in medical text books?
Dr Alasdair Coles
The first description in words was in the 1870s by Charcot (Paris),
although there is a picture of
something that looks like MS in the brain from a British book some
years earlier.
Marcus Stout:
I was diagnosed in 1999 - I have RRMS and am marked 2 on the scale of
0 to 7. I
am now 47 and used to be very active. Without being specific, is there
a possibility of a
breakthrough in treatment in my lifetime and will it be sooner rather
than later, please?
Dr Alasdair Coles
Dear Marcus, I would predict that within ten years we will be able to
treat the inflammatory early
phase of MS much better. I think it will take longer for us to be able
to repair damage already
done by the disease.. or treat later stages of the illness.
Less
I had an instance of optic neuritis which has left me with slightly
worse eyesight in one eye that
gets a lot worse in heat/bright light etc. Am I right in thinking that
any treatment for this would
have to be a remyelinating treatment?
Dr Alasdair Coles
You are right. For a while it was thought that a simple infusion of
a drug called IVIG might help,
but sadly that turns out not to be the case. Incidentally, for those
who do not know, less has just
described the famous "Uhthoff effect" of eyesight from optic nerve
damage getting worse in the
heat.
Jan159937
Your Campath trial that has been running and mentioned on the MS website,
how are the
volunteers doing, have there been any significant improvements?
Dr Alasdair Coles
I cannot say! I do not know! We cannot tell, as some of the patients
are on interferon and the trial
is a comparison of the two drugs
Jan159937
Thank you
TC
I am 44 and was diagnosed with progessive MS 2 years ago, all the research
seems to be aimed
at relapsing remitting , are there any research projects which are
appropriate to me ?
Dr Alasdair Coles
Dear TC, this is a real problem. All the drug trials done to date in
PPMS have shown NO effect of
the drug. (This makes some think that PPMS is a different disease from
RRMS, personally I am
not so sure). But it has discouraged people from trying new drugs in
this form of MS.
Peter
How do you differentiate small vessel disease of the brain and deep
white matter patches of
MS?
Dr Alasdair Coles
Dear peter, often very difficult to do that, especially in those over
the age of 50. Sometimes it is
impossible which is when a lumbar puncture can be especially useful.
Peter
There were some articles of tetracyclines and statins having good effect on MS. Why?
Dr Alasdair Coles
Well, this is an exciting area. In mouse models, the statin drugs do
seem to reduce inflammation
and there are at least two trials looking into its effects in people
with MS.
Peter
Thanks
Peter
Can MS be one of the channelopathies because symptom relief after IV
methyl prednisolone is
faster than its anti-inflammatory effect to occur?
Dr Alasdair Coles
Dear Peter, I do not think so. Not in the direct sense of the word.
I think the rapid relief you
describe is due to the reduction in the brain of inflammatory molecules,
such as nitric oxide,
which causes a physiological conduction block
Peter
Thanks again
Question
What should I use to manage my MS. I have PPMS and don't know if i should
act differently from
someone with RRMS. Please help.
Dr Alasdair Coles
There are no immuno-acting drugs that help PPMS. So you need to focus
on the best treatments
of your symptoms. The advice on diet etc is the same as for RRMS.
Less
When advising people who are worried their children might get MS, one
thing neurologists don't
say (for fear of being wrong I suppose :) is that it is very unlikely
that MS will be untreatable in
30+ years time and that by the time their children are grown up there
will be some other
uncurable condition to worry about. Would you say this is reasonable?
Dr Alasdair Coles
I am not sure I could go that far...
Jamesp
Has there been any research, which you would deem valuable, into bee venom therapy?
Dr Alasdair Coles
I think the idea behind looking at bee venom is excellent... but the
research done to date is poor,
which is a shame.
Jamesp
Thankyou
TC
I have recently had a number of tooth infections which required anti-biotics
, 4 courses in 3
months, I wondered if either the infections or the drugs could make
my immune system more
active and therefore increase the rate de-myelinsation (not sure the
spelling is right ?).
Dr Alasdair Coles
Dear TC, on the whole there should not be a problem. But it is true
that infections, particularly
viral, do slightly increase the chances of having an attack. Antibiotics
do not affect MS.
Rachel
A well meaning relative recently sent me a book called miracle sugars,
regarding a recent
breakthrough discovery of glyconutrients which are able to maintain
and balance your immune
system. Have you heard of this and if so, what is your opinion?
Dr Alasdair Coles
I have heard of this and looked hard for a decent study to support the
claims, but not found one.
Sorry
TC
thanks
Less
Given the large migration of black populations to northern countries
in the last 50 years at all
different ages, could you explain the difficulties in determining the
cause of the discrepancy in
MS prevalence between black african and white people?
Dr Alasdair Coles
Dear less, because it is complex I guess... certainly the simple theories
(like a single bad virus in
the western world) don’t hold up
Peter
In one German study of monthly MRI scans on MS patients, they found
seasonal changes in the
frequency of MS patches, between October and May, with 2 months delay
in radiological
change. Why?
Dr Alasdair Coles
Dear Peter, not everyone has found this. But I think it is probably
real and reflects the cyclical
exposure to viruses which temporarily increase disease activity
Laila
The chat is about to close - we will accept only a few more questions
Peter
Thank you
Rachel
Thank you Dr Coles
Dr Alasdair Coles
A pleasure: sorry about the spelling!
Rachel
:-)
Less
thank you for a very enlightening talk.
Dr Alasdair Coles
Good questions
Guest
Thanks Dr. Coles!
5pm Chat room now closed
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