Bid to close disability loophole
By Laura Burkin
DISABILITY campaigners
http://www.wansteadandwoodfordguardian.co.uk/newsandfeatures/localnews/display.v\
ar.382295.0.bid_to_close_disability_loophole.php


Bike tour set in cyclist's memory
By Chuck McGinness, Palm Beach Post Staff Writer
http://www.palmbeachpost.com/localnews/content/auto/epaper/editions/sunday/local\
_news_e3beae9db0bc11a800c8.html


Multiple Sclerosis Drug May Cause Heart Problems
By Merritt McKinney

       NEW YORK (Reuters Health) - A drug used to treat the degenerative
neurological disease multiple sclerosis (MS) causes a small but significant
increase in the risk of a heart condition that impairs the heart's pumping
power, according to a new report. Researchers also found that the drug,
mitoxantrone, seems to raise the risk of congestive heart failure, but to a
lesser extent.
       According to the study's lead author, who works for the company that
markets the medication as Novantrone in the US, the risks of the drug are
"very manageable."
       "These are known complications that can occur," Dr. Donald E. Goodkin,
the director of medical affairs at Amgen Corporation, told Reuters Health in
an interview. The risk of cardiac side effects, he said, can be reduced by
following the warning labels that recommend performing heart tests in some
situations and limiting treatment to a total of 3 years.
       In MS, the slow destruction of myelin--the thin, protective coating
that insulates nerve fibers in the brain and spine--can lead to numbness,
muscle weakness and stiffness, impaired vision and coordination problems.
       In the interview, Goodkin said that mitoxantrone is the fourth drug
approved to treat MS in the US. In what Goodkin said was an atypical move,
in 2000 the Food and Drug Administration ( news - web sites) approved
mitoxantrone to treat MS on the basis of studies conducted only in Europe,
not the US.
       But one of the FDA's concerns, Goodkin said, was that mitoxantrone,
which was already approved for use as a cancer treatment, might increase the
risk of certain side effects. The government agency, he said, "wanted the
company to make a commitment to monitor the safety of the drug in the US."
       That trial has not reached its goal of enrolling 500 patients, but to
date there have been no cases of congestive heart failure in the roughly 450
participants who have been enrolled so far, according to Goodkin.
       In a review published in the September 24th issue of the journal
Neurology, however, Goodkin and his colleagues report that several cases of
cardiac complications including heart failure have occurred in three
mitoxantrone studies. The review covered three studies that included a total
of 1,379 MS patients taking mitoxantrone.
       In one study, 4 out of 124 patients (3.23%) developed a condition
called diminished left ventricular ejection fraction (LVEF), a measure of
the heart's blood-pumping strength. In a second study, about 2% of patients
experienced diminished LVEF. The third study did not include LVEF
measurements, but 2 of the 452 patients (0.44%) died from congestive heart
failure.
       Although the report shows that cardiac complications can be an
unintended side effect of mitoxantrone, Goodkin said that there are steps
physicians can take to minimize the risk. He noted that the package insert
for the drug states that a test of cardiac function, including LVEF
measurement, should be conducted before starting the drug.
       Mitoxantrone is given intravenously at 3-month intervals, and once a
patient has received a certain cumulative dose of the drug, LVEF function
should be assessed before they receive another dose, Goodkin said. Finally,
after a patient's cumulative dose reaches a certain cut-off point, the
treatment should be stopped, he said.
       In the case of one of the two patients who died with heart failure,
the man had been refused additional mitoxantrone treatment after his doctor
saw signs of heart problems. But the patient went to another doctor, who,
not knowing that the man had received mitoxantrone before, gave the patient
additional doses of the drug. In the end, the patient received a higher
cumulative dose of mitoxantrone than is recommended.
       Although Goodkin said that mitoxantrone seems to have a "very
manageable profile" in terms of cardiac side effects, he and his colleagues
recommend in the report that patients continue to be monitored to determine
whether more patients taking the drug eventually develop heart failure.

Dear Aunt Jane--

Your poem brought tears to my eyes. That's not really that unusual these days
as I've finally given myself permission to mourn my brother's passing last
week.

You have given my encouragement and inspiration. We each walk our paths
alone. But it doesn't hurt to look over and see other individuals hauling their
crosses, giving us a wink and a nod.

I'm proud to be in your vicinity.

kate

I've had both things - troubles with sleep at times.  Also, during the
spell when I was sliding form R/R to progressive MS mode 3.5 years ago, I
almost always had the same pleasant melody running through my head.  I
think it was some sort of self protective internal instinct at work.  I
would often say to myself that, if I could hear this lovely music, things
couldn't really be so terrible.  In retrospect, things really were pretty
scary, but I've been incredibly lucky that I've bounced pretty far back
with the help of aggressive chemotherapy.

Just a reminder that we (meaning this group) has it's own chat
room that is very easily accessible 24/7. Just log on to our home
page at: http://groups.yahoo.com/group/About-MS/
Log-in and then click on the chat link on the left pink column
between post & files.

Healthy balance

If you've been putting forth effort for a while, take a rest. When you've been
resting for a while, get up and get going again. Life is a cycle of effort and
rest. Everywhere you look in nature you can clearly see how a healthy balance
between effort and rest is essential to all living things.

You eventually reach a point of diminishing return by working harder and longer.
Soon you get to the place where, in order to continue moving forward, you must
first stop for a while.

The same kind of situation occurs when you go too far in the other direction.
When you spend a long period never making any effort, it ceases to become
pleasurable and simply becomes unbearably monotonous.

Give all you have to the effort, and then give it a rest for a while. Both
effort and rest will serve to energize you as long as you keep them in balance.
Pay heed to the cycle that pervades all of life, and life will work great for
you.

-- Ralph Marston


Illness can't stop this Euless helper
http://www.dallasnews.com/localnews/city/tarrant/stories/052303dnnoruway.3cd93.h\
tml

MS doesn't stop artist from painting
By Beverly J. Lydick/Tribune Staff
http://www.fremontneb.com/articles/2003/06/09/news/news2.txt

Don't give up. And don't believe no one understands. I just received a note
from my nephew offering condolences for my brother's death last Saturday. I
have one of the most screwed up families and to hear from him meant more than he
will ever know--which is exactly what I told him in my response to him.

And I broke down and cried.

And then I read your post.

And now I'm crying for you.

Some people have all the luck--so they say. And then there's you. Don't you
wonder what you ever did to warrant so much misery?

I wonder sometimes what I ever did that was so bad that I had to be born into
the family I got.

And you know what the answer is?

We don't get anwers to why in the big scheme of things. "Cause" is as
good/bad as anything.

I believe there is a heaven...mostly because this life is no picnic.

I am truly sorry for your problems. The courage you have just to be able to
put it down in a message is awesome.

You are an amazing woman.

kate

Greetings, all!

I thought I'd share a poem. It is decidedly Christian. Perhaps you
will find it helpful, now or sometime in the furure. I'm glad to
share it, but please note that it is copyrighted. Anyone who might
want to reprint it will need my permission.

I've also created a poetry folder in the Files section on the About-
MS home page. Click on Files, click on the Poetry folder, and you'll
find Sometimes It Hurts any time you want it. (This is the first file
for the group. Maybe you have something to share that is worth
saving. Create a file or add to the Poetry file! It's good for all of
us and anyone who might join later.

Love to you,
Aunt Jane

Sometimes It Hurts
copyright 1986 Jane E. Harmon


Sometimes I wish I'd never undertaken this,
This road which is too hard for me...

But then I remember that Jesus called me to come this way
And I remember the road He willingly trod
And how He came to know how hard it is for me
To walk this path and carry my cross.

Sometimes my body at war with itself
Makes me a helpless victim of tireless pain.

But then I remember Jesus, giving up being God
To be a Man in a primitive land, a forty day fast
And then the whipping, the cross, the nails, then hell
Which allows Him to know and pervade my pain.

Sometimes it hurts to be so misunderstood;
Motives and reasons not mine attributed to me.

But then I remember Jesus did not know a single one,
Not even His mother, who really understood.
But because the Son suffered, His Father understood
Which allows Him to know and pervade my pain.

Sometimes I get so lonely when no one calls
Or writes or visits or does so perfunctorily.

But then I remember how Jesus was so lonely
When His friends were uneasy and frightened
And confused by Him and His suffering and His calling,
Which allows Him to know and pervade my pain.

Sometimes I wish it could be some other way,
Any other way.

But then I remember Jesus wished it, too.
So hard He sweat blood over it.
And after He wished it His way He wished it more to be Father's way
And so He knows my struggle between Father's will and mine.

Sometimes I wish I were dead,
Gone home to be with Jesus.

But then I remember I already died my one and only time,
When I realized Jesus died in my place.
So now I am abundantly, eternally alive with Him
Whether here and now or when Heaven calls.

Hi, I'm 33 y/o and have had MS 'challenges' for the past 10 years, almost to
the month actually.  About 5 years ago I noticed an article on the net about
how the brain regulates sleep and that if there is a MS flareup in that
particular area of the brain, then it can effect sleep patterns.  I took it
to my doctor as I wasn't getting good quality sleep.  As an aside, I think
that depression and the stress of having an unpredictable chronic disease
can do it as well!  I think even the stress of having to try to learn, in my
early 20's, how to live with it and explain the disease to a potential
employer or boyfriend and to my friends and family took it's toll.  So five
years ago my doctor prescribed sleeping pills (Temazapam, quite mild
apparently) to help when I needed my sleep, the bonus is that they relax my
muscles so they don't twitch/spasm.  I only take one and just when I think I
need it.  One pretty much zonks me out for 4-5 hours.  Sleep is so important
for the body to heal, especially when having a flareup.  The pills helped to
regulate my sleep and now I hardly ever take one.  Last night, without a
pill, I slept for 2 hours, got up to go the loo, then slept for 5 hours IN A
ROW, how fantastic is THAT!!  Sometimes I can go the whole night.

Karen

Thank you Aunt Jane!

Rockwood Clinic opens multiple sclerosis center
http://www.spokanejournal.com/spokane_id=article&sub=1598

MS doesn't stop artist from painting
By: Beverly J. Lydick/Tribune Staff
http://www.fremontneb.com/articles/2003/06/09/news/news2.txt

Screeners retraining to search disabled
By Tom Ramstack / THE WASHINGTON TIMES
http://www.washtimes.com/business/20030527-100856-3478r.htm



~Joyce
A truly wise person will not be carried away by any of the eight winds:
prosperity, decline, disgrace, honor, praise, censure, suffering or pleasure.

Hi!!

Hi all,

Today started off a bad day.  When I got out of bed my legs would just not
work plus I felt as if I had a hang over (I don't drink).  It took me over
an hour to out of the bed and of course the husband was not there to help.
Once up, I had to leash the dog and give him a bath.  One bath and I was
exhausted.  Oh this disease stinks.  It's bad enough I have three slipped
cervical disks, and a tumor in my head, but to top it off I have Acute
Progressive MS.  Lately my symptoms have been progressing quite quickly and
I am finding this extremely depressing.  I see no way out, no-one
understands what this disease is like or how it feels.  I give up.

Gina

Hearing voices is called "auditory hallucinations." It may be a side effect
of or an adverse reaction to a medication, or it may be a symptom of an
illness. It is NOT likely to be a direct symptom of MS, but that does not
mean that is not possible.

Your pharmacist may be the best person to consult about the possibility of
it being due to a medication or a combination of medications. Your primary
care doc should  also be consulted.

Aunt Jane

A ROUND OF GOLF RAISES CASH FOR MULTIPLE SCLEROSIS CENTRE
http://www.westgaz.co.uk/displayNode.jsp?nodeId=86334&command=displayContent&sou\
rceNode=86333&contentPK=5943515


Sister's ailment launches journey: Keller siblings help inspire a new club for
families dealing with multiple sclerosis
http://www.dfw.com/mld/dfw/news/6027920.htm


FDA Approves Prefilled Syringe for Multiple Sclerosis Therapy, Avonex
http://www.docguide.com/news/content.nsf/news/8525697700573E1885256D35004B336C?O\
penDocument&c=Multiple%20Sclerosis&count=10



~Joyce
There is always a piece of fortune in misfortune.

Sorry to hear about Marilyn's bad luck about the MS chat room.  I know it's a
struggle whether in a wheelchair or still walking.  I go to a generic disability
chat room, anyone can have anything wrong with their body.  We chat about
disability issues rather than MS ones and it's somehow good for me to know that
people with other chronic conditions have similar feelings and experiences as
me.  The disability chat room is at:
Http://www. chattersville.com.
It was really good the other night at 2am when I couldn't get to sleep to be
able to chat about some disability issues that were bothering me.
By the way, I think this yahoo group is wonderful for MS-related dialogue.

Karen

Hi,

One under diagnosed problem in MS is sleep disorder. While there are more
than 80 recognized sleep disorders, at least two of them are common in MS.
Diagnosis involves an overnight sleep study, either in a sleep medicine
center or in your own home.

   a.. Restless Leg Syndrome and periodic limb movements. You may or may not
be aware that abnormal leg movements are occurring, but they do disturb
sleep.
   b.. Sleep apnea. Apnea means lack of breathing. There are two types; they
can occur singly or as mixed sleep apnea.
     a.. Central sleep apnea occurs when the respiratory control centers in
the brain do not function properly.
     b.. Obstructive sleep apnea (OSA) occurs when something blocks the upper
airway. Snoring is a common symptom of obstructive sleep apnea, but OSA can
occur without snoring. People with MS are at risk of OSA for several
reasons.
       a.. Weight gain makes the diameters of the airways narrower, thus
increasing the likelihood of airway obstruction. People with MS gain weight
through inactivity and treatment with steroids.
       b.. Just as changes in tone and weakness occur in arms and legs, they
can occur in the muscles of the throat and trunk. Spasticity, flaccidity and
weakness can contribute to airway obstruction and ineffectiveness of
breathing and cough.
While everyone dreams, some people claim never to remember their dreams. You
have noticed a correlation between the onset of MS and a change in your
awareness of dreams. For you, that may signal a new sleep disorder.

Sleep occurs in stages. Dreaming occurs in the REM (rapid eye movement)
stage. People with sleep apnea may awake without knowing it hundreds of
times a night. They have difficulty finding enough time to move through the
stages of sleep to get to the really restful part we all need. Sleep apnea
and restless legs may play a significant part in producing the fatigue so
many people with MS experience.

There are effective treatments for many sleep disorders. Treatment by a
sleep medicine specialist cannot only improve quality of life, it can be
lifesaving. Sleep apnea can kill, either through daytime sleepiness
accidents or by increasing blood pressure during sleep.

Pleasant dreams!
Aunt Jane

Does anyone hear voices?  I was wondering if there was a link between this,
which BTW , just started and all the meds I am on.

Gina

I don't know if it's common, but I no longer remember dreaming either.

Connie

Multiple Sclerosis Treatments Face Off
Long-Term Study Gives Rebif the Edge Over Avonex
http://my.webmd.com/content/article/66/79675.htm?z=1728_00000_1000_ln_04

man riding electric scooter to state capitol for MS Society
By Leia Jobe/Times-Review Intern
http://www.cleburnetimesreview.com/articles/2003/06/05/news/top_story/top.txt

DEIRDRIE TO SKY-DIVE FOR MS CENTRE
BY: SCOTT MACNAB
http://www.thisisnorthscotland.co.uk/displayNode.jsp?nodeId=84092&command=displa\
yContent&sourceNode=83929&contentPK=5915829






~Joyce
Wouldn't it be nice if  we could simply press "Ctrl Alt Delete" and start all
over when we messed up our life?

Hi

I dream all the time, I blame it on my medicine.

Ruth

Sorry  to  be  so long  answering, I had  been  leaving  some
messages  unanswered!
Question: are  you  using  any MSG, E162, OXO, OR  HYDROGENATED  VEG OIL? They 
are   common ingredients  in  many  foods. A vitamin B Complex and quirice  root
tabs  can  help - they help me anyway.
some  health  food  shops  have  their   own  gravy  cubes, or  add  some
herbs, clove  of  Garlic chopped , marjorium and or bay leaf!

best wishes,
Elaine K.

Hi Karen,
                The very first time I reached out to anyone was in a MS chat
room, I was feeling alone and in pain, tired of laying all of this on my
husband, so I found a chat room, introduced myself, symptoms and all and was
immediately shot down in the conversation because I can still walk, all I got
was
,"Oh, you can still walk ?" kind of thing. I never thought I would feel guilty
because I haven't reached that point of a wheel chair, considering all the other
things that have been taken away. So needless to say I will never go back
which is a shame because I could have used the extra help. I hope your
experience
was a better one ..Be well........Marilyn

Hi,
I have posted on the board in the past but it has been awhile now and thought
everyone might like to see the current Top 10 list of MS treatments as they
have been rated at my site RemedyFind.
A little background.

Remedyfind is non-commercial and unbiased (not sponsored by any drug companies
etc.).  I started it 2 years ago to try to find help with treatments for Chronic
Fatigue Syndrome (which I've had for some 20 years).  After doing the CFS
section I realized the same approach could also work for other health conditions
and so the site has now grown to cover 19 conditions, with some 20,000 members
and newsletter subscribers.

Obviously this Top 10 list has to be taken "with a grain of salt".  We are all
different, and what works for one person won't necessarily work for another,
but my hope is that certain trends might show themselves over time (and after
hundreds or thousands of patient ratings).  We'll have to see about that, but at
least in the meantime I think it is helpful to hear other patient accounts =
of what has worked, or not worked, for them.

If you have a few minutes to share what has worked – or hasn't worked – for
you it would be wonderful. Here is the address of the Remedyfind MS section.

http://www.remedyfind.com/hc-Multiple-Sclerosis.asp

All the best,
Brett Hodges

A major step seen for stem-cell research
Scientists link molecule to growth of brain cells
By Bruce Lieberman
UNION-TRIBUNE STAFF WRITER
June 3, 2003

http://www.signonsandiego.com/news/metro/20030603-9999_1m3stemcell.html






~Joyce
Suffering ultimately arises from delusion.

http://www.reporter-news.com/abil/nw_state/article/0,1874,ABIL_7974_2003829,00.h\
tml





~Joyce
Your hopes and dreams are far more valid than your doubts and fears.

Hi, regarding people to chat to, I go to chat rooms for people with
disabilities, especially when I'm feeling a bit down about the MS and just
need to talk to someone who knows what I'm going through.  I originally did
a google search with key words such as 'chat room for people with
disabilities', or substitute the word disabilities with MS or multiple
sclerosis.

Karen

Hi,
I have been living with MS for 7 years and I am no longer able to
walk. One strange side effect of MS is that I cannot remember the
last time that I had a dream. Does anyone know if this is a common
occurance with MS paitents?
Thanks,
Pam

Jonie and I have similar stories. I'm your age and have had MS since I was 21.

I was never very good at ice skating. Sounds like you are as active as
possible.  We just moved and bought an eliptical trainer (?). My problem with
walks
is--I never know when I'm half way there. I need something where I can just
get off, not have to walk back.

I'm new to this board, too.

Welcome
kate