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Secondary Progressive MS question
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| Herawood 2005-04-11, 6:03 pm |
| Hello,
I recently reconnected with family members abroad and found out my
cousin has had MS for about 20 years. Starting as remitting/recurring
and now secondary progressive. She is at this stage wheelchair bound
and seemed to me unable to move much at all by herself. I was charged
with seeing what treatments were available here in the US. All my
research so far seems to indicate she may be too far gone. Can anything
help make her symptoms better. She seems to suffer greatly from
lethargy and of course no range of motion.
She is currently taking Baclofen , Cloazepam , Pyridostigmine Bromide
60 mg. Any info would be appreciated.
Thaks,
Kate
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| Herawood wrote:
> Hello,
> I recently reconnected with family members abroad and found out my
> cousin has had MS for about 20 years. Starting as remitting/recurring
> and now secondary progressive. She is at this stage wheelchair bound
> and seemed to me unable to move much at all by herself. I was charged
> with seeing what treatments were available here in the US. All my
> research so far seems to indicate she may be too far gone. Can
anything
> help make her symptoms better. She seems to suffer greatly from
> lethargy and of course no range of motion.
> She is currently taking Baclofen , Cloazepam , Pyridostigmine Bromide
> 60 mg. Any info would be appreciated.
> Thaks,
> Kate
hi kate,
i'm curious why you're checking up on treatments in the U.S. -- is your
cousin contemplating visiting the U.S. for treatment, or is the family
interested in knowing what's available, but not covered by insurance or
programs in their area and contemplating paying for treatments
themselves, or....?
if she's secondary progressive with superimposed relapses, the D.M. of
choice among most U.S. neurologists would probably be betaseron. also
approved in the U.S. for SPMS is novantrone, a chemotherapeutic med,
given by infusion (at lower doses than it would be given for cancer).
Pyridostigmine Bromide is approved in the U.S. for myasthenia gravis
(sp?) and gulf war syndrome only, so she most likely WOULDN'T be on
that. as was mentioned already, either a P.T./O.T. or other trained
rehab person could work on range of motion with her. if she hasn't got
the ability to do ROM exercises, then passive range of motion --
someone else moving her limbs for her -- would also be a basic; keep
contractures and such at bay.
as was also mentioned, klonopin and baclofen have the potential to
cause both tiredness and weakness. the Pyridostigmine Bromide (i'm
copy/pasting it every time, LOL) info i found online says it should not
be taken with any meds that cause drowsiness, or with muscle relaxers
-- is baclofen considered an exception to the muscle-relaxer no-no, and
that's why she's taking it? baclofen helps a lot of people, zanaflex
and valium do as well.
most U.S. neurologists will write prescriptions for anti-fatigue meds;
the first line is often symmetrel/amantadine, an anti-viral,
anti-parkinsonian drug with increased energy as a side effect. many are
also helped by provigil/modafinil, a 'wakefulness-promoting' agent,
FDA-approved for narcolepsy.
make sure her wheelchair is comfortable! people's needs change s their
bodies change, check the cushions and support and inquire about her
comfort and feeling of safety, replace pads and wheels and all that
when they get worn out.
any other symptoms she's having would or could be treated with meds --
urinary problems, painful muscle spasms, burning sensations,
depression.
and make sure she's got things to keep her interested in life. if she
enjoys reading but has vision problems, large-print books and
magazines. if she's in a wired household, an adapted computer! if
family members are nearby and available, they can accompany her on
outings she might be interested in.
best of good fortune,
rose
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| Robert 2005-04-12, 11:39 am |
| In article <1112851834.322126.125340@g14g2000cwa.googlegroups.com>, "Herawood" <herawood@aol.com> wrote:
>Hello,
>I recently reconnected with family members abroad and found out my
>cousin has had MS for about 20 years. Starting as remitting/recurring
>and now secondary progressive. She is at this stage wheelchair bound
>and seemed to me unable to move much at all by herself. I was charged
>with seeing what treatments were available here in the US. All my
>research so far seems to indicate she may be too far gone. Can anything
>help make her symptoms better. She seems to suffer greatly from
>lethargy and of course no range of motion.
She would probably be well-served to see a doctor and a physical therapist.
Range of motion can be "fixed" to some extent and it might also improve her
outlook/lethargy. If she could get to move by herself a bit it would also
improve her outlook and quality of life.
>She is currently taking Baclofen , Cloazepam , Pyridostigmine Bromide
>60 mg. Any info would be appreciated.
Whoa, that may be a component in why she is lethargic! Baclofen and clonazepam
can make you tired and baclofen can DEFINITELY make you weak if you are
sensitive to it (like I am...).
Get thee to a doctor!!! (and good luck)
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| rose wrote:
> Herawood wrote:
>
>
> hi kate,
> ...
>
> and make sure she's got things to keep her interested in life. if she
> enjoys reading but has vision problems, large-print books and
> magazines. if she's in a wired household, an adapted computer! if
> family members are nearby and available, they can accompany her on
> outings she might be interested in.
>
> best of good fortune,
> rose
Dear Rose,
I have become an infrequent lurker here and am so heartened by your
post...Thank you from the readers of such caring, thoughtful and
thorough writing.
Thel
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| Joan Carter 2005-04-19, 10:57 pm |
| On Tue, 19 Apr 2005 20:00:56 GMT, Thel <thaug@shaw.ca> wrote in
alt.support.mult-sclerosis:
>I have become an infrequent lurker here and am so heartened by your
>post...Thank you from the readers of such caring, thoughtful and
>thorough writing.
Thel, I remember you from MS-Can-l. You are in BC as I recall. You 'knew' me as
Joan Kennedy from Halifax. How are you?
---
Joan
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| Tracey 2005-04-19, 10:57 pm |
| I for one say, Feel free to lurk Thel. You can learn alot from the people
here. I know that I have and I've had this disease for what seems to be a
life time.
Well good luck to you and your cousin!! Tracey
"Thel" <thaug@shaw.ca> wrote in message
news:Yrd9e.1075153$8l.162757@pd7tw1no...
> rose wrote:
>
> Dear Rose,
>
> I have become an infrequent lurker here and am so heartened by your
> post...Thank you from the readers of such caring, thoughtful and thorough
> writing.
>
> Thel
>
| |
| bobbyD 2005-04-20, 5:55 pm |
|
"Joan Carter" <spamfree@sentex.ca> wrote in message
news:lkra61h792gj7iq2ka65acpe92uv5jgs6t@4ax.com...
> On Tue, 19 Apr 2005 20:00:56 GMT, Thel <thaug@shaw.ca> wrote in
> alt.support.mult-sclerosis:
>
>
> Thel, I remember you from MS-Can-l. You are in BC as I recall. You 'knew'
> me as
> Joan Kennedy from Halifax. How are you?
> ---
> Joan
hey joan that is THEL ,and she is form the mscan list too,,,
i talked to her a few times,, now,, i was in that group a long long time
ago,,,, maybe it was 1995 when i joined!!!! same time as this place,,,, i
just dont like being moderated,,, i find that offensive,, so i left,,, i
need to be free to speak,, so here i am!!!!!
bobbyD
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| Herawood 2005-04-27, 8:52 am |
|
rose wrote:
>
> best of good fortune,
> rose
Thank You for your response! The deal is she is in a third worldesque
country with very few resources. I could bring her here for treatment
but that's going to be cost prohibitive right now and I can't look
after her while she's here so...all I can do is send information. Her
wheelchair was like 40 years old. She spends most of her time alone and
sleeps a lot. My heart just breaks for her!
So I have no idea what meds she has access to but it did seem to me
when I researched that her meds together would cause excessive
tiredness, lethargy.
I'll make the suggestion that she reconsider other meds to bring up to
the doctor and hopefully her daughters can spend time trying to
exercise her limbs out a bit everyday.
Thank you!
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| hi kate,
the M.S. International foundation has a list of countries with MS
Societies on their website, here --
http://www.msif.org/en/global_ms_network/index.html
you'd probably be surprised by some of the countries that show up --
places where M.S. isnt' as big a problem as in other areas --
argentina, armenia, brazil, india, japan, etc.
while countries with only a single M.S. society aren't likely to have
as much practical assistance to offer as countries with local chapters
all over the place, contacting the society for the country-of-interest
would at least let you know exactly what IS available in your cousin's
area.
best regards,
rose
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