I'm new and will be checking in every once in a while with questions or to see
if I can help with info for anyone else. will also try and post any new info I
may find. My 1st question is:

Has anyone been prescribed and taken a dose of 1250 mg of prednisone
PER DAY for 3 days (which is 25 pills/50 mg per pill, taken all at one
time in the day) as opposed to a round of intravenous solu-medrol
followed by an oral dose of prednisone that is only a/b 100 mg per day
for several days for an exacerbation?

I have had R-R MS since 2000 but, apart from the two early flares, I'm
been mostly... well, 90% diminishing to 20% in remission

Earlier this year I became 'registered disabled' which means I get
help with parking and transport but, sadly, I've had to cancel my gym
membership :(

However, on Monday, 23 June, I had delivered a Nintendo 'Wii Fit'

This is an excellent device as it helps my with and measures my
balance and fitness :)

During the past four days I've gone from a 'Wii Fit age' of 76 -> 65
-> 56 -> 45

At this rate I'll be teething again in about two weeks time!

If you know someone who owns one, I recommend having a go with it for
a few days

Keep well,

Jayne

I wont be on-line till next Tuesday but I wanted to ask you all to
wish me luck. I have a date Friday with a new gentleman that lives at
my adult day-care home. I started getting the idea he might like me
when he started calling me 'honeybear' whenever he sees me! Today as I was
getting ready to leave he asked me when I'd be back to see if we'd be back at
the same time - whenever we're together at the house we are always making each
other laugh. I was too chicken to ask if he liked me so I asked him to go out to
coffee and he said how about we'll go out to eat. I offered to pay the whole
bill but he declined and said he would pay. I don't know what you guys think but
it sounds promising to me. I will send the details when I get PC access next
Tuesday which will be my birthday. Hope everyone has a great rest of the week
and a super weekend.


                                            Laura

PS: check out this neat website:
http://butyoudontlooksick.com/

Hi All,

I am wondering if anyone can give me some clues about my MRI.  I had it done on
April 25th.  On Monday, I called my doctor and her nurse returned my call,
telling me that it would be necessary to have a neurologist talk to me about the
findings.

My doctor had even before the MRI, ordered me to see a neurologist.  Well my
appointment to see him, for the very first time, was yesterday.  But because of
an emergency in his family, he could not keep his appointments yesterday.  So
now I do not see him til May 9th.

Well I did peek at the MRI report when I had to get the report and pictures
released to hand carry to the neurologist.

Are abnormal signal intensities what make for the lesions or plaques?

Here are some of the words I had picked off the report quickly before taking the
big envelope to the doctor's office:

Flair sequences ... some focal areas  of abnormal signal intensity involving
posterior right parietal lobe on #17 in the left frontal lobe on #17 18  19  and
right occipital lobe #11 12 6

Dymyelinating process

But it did go on to say that it was not presenting as typical MS.  Is there even
such a thing as "typical" MS?

Well I wondered if the signal intensities are what form lesions?

What all does anyone here think will be the next step?  And does anyone here
have a similar MRI result?

Thank you for any and all help.

Kind Thoughts to All,
Bonnie

Hello and welcome to the L.I.V.E. with MS Group!

Some important things to note:

#1 Our purpose is to encourage one another as we face the many challenges of
having MS, or providing physical, emotional and spiritual support to others who
have MS. An integral part of our mission (for those interested in doing so) will
be prayer - for example members may as a group, or individually choose to pray
and/or fast for one another as needs and challenges arise in our lives.

#2 Please make your 1st post to the list an introduction - tell us at the very
least why you joined and if you plan to actively participate or just 'lurk'.

#3 Whenever posting please be sure to change the 'Subject' field to reflect the
topic you are posting about. (The "A-MS" subject header is added automatically.)

#4 Check out our links page where we have an extensive list of on-line
resources. Be sure to add a link to your homepage in the members file while you
are there and remember Mondays are always "Share a Link" Day on the list.
http://health.groups.yahoo.com/group/About-MS/links

#5 As list hosts, we reserve the right to unsubscribe any member who violates
common courtesy in behavioral standards. Try to keep your messages informative,
instructive, and if at all possible uplifting and encouraging,

#6 Absolutely NO advertising or contacting members off list - we are after all a
support 'group' - sharing with all members is what we are here for - no
exceptions!

Thank you for carefully considering your participation and please consider
inviting your friends and family members to join us as well!

Trish and Jesyca
Co-hosts

Can't be a whole lot of help because I just had my first Tysabri infusion April
16th. However, over the years, I have had remissions. I'm now 64. I had help
with our children and household, when they were teenagers. My symptoms started
again 4 years ago, worse than before. I started with Betaseron. After an MRI
showing many new lesions and a big relapse in Dec. 2007, I stopped Betaseron and
tried Copaxone in Jan. Had a big adverse reaction to it and had to stop. Then I
was sent to an MS neurologist. It took 3 months to start Tysabri. I won't know
if it is helping slow the lesions until I have a follow-up MRI but I didn't have
any new activity since Dec. from MRI in March, which was good news.

Hi,

I joined this group because I would like to learn more about MS, and because I
have some questions about it. I have not been diagnosed, but have a lot of
matching symptoms, and I have an aunt who has it. 5 years ago, I was diagnosed
with Fibromyalgia, but FM is not supposed to be progressive and my symptoms are
getting worse/more of them. I was also told that I have symptoms that are not
typical of Fibromyalgia. I am hoping that by joining this group, I can find some
answers. I look forward to talking with you.

Sincerely,
Carrie

Hi,

I have had MS for a 20 years, but it has not shown itself to be so bad until
now.  I was diagnosed in 1997.  I was not told it was MS in 1988 when I had
transverse mylitis.

I was doing fine up until I gave birth to my third daughter.  I have
gradually gotten worse.  I am currently on copaxone.  It does not
seem to be working for me anymore.  I cannot take avonex due to
serious side affects.  I am considering tysabri.

Is there anyone out there taking this?  I really need to know.  You
see I am 42yrs old. I am trying to keep up with my three girls and I
I have to be there for them.  I do the best I can, but I sometimes it
is hard. I have seen people doing well with tysabri, but not enough
people on this.  What is your expeience?  I am desperate to hear some
good feedback on this.

Thank You,

Mary Ann

Thanks for all your help with this research blog. We have just launched a new
site which you might find of interest. Please go to
http://www.thepatientsvoice.org

Thanks,
Belinda

I'm so glad that you are not too scared about having your babe!

I have three daughters who are now: 31, 28 and 21 and my MS was DX'd
eight years ago. When my daughters still lived at home, they were a great help -
even at the notorious 15-years! Now, the eldest is a teacher who is married with
her own son; no. two is pursuing a career as an architect and no. three is
studying for a degree in International Fashion Marketing. We divorced four years
ago but, shortly afterwards, I met and fell in love with a wonderful man and we
were engaged two months ago. He's so understanding about the limits that the MS
has placed on me and he looks after me very, very well!

Best of luck with your pregnancy and the rest of your lives,
Love and hugs,

Jayne x

I am paralyzed from a spinal cord injury -- SCI.

I am trying to get people paralyzed from SCI, MS, MD, & CP to answer a
brief online questionnaire that I have created.  The questions are
pertaining to interest in a program to improve health and function
called Active Regeneration.

I am hoping to use this data to satisfy the requirements of a masters
thesis.  Also, I want to publish this because there are no research
articles indicating that people are, or, are not, interested in
programs designed to improve health and function.  The survey is a 12
question online survey.

Those are my goals.  I would love to have your input.  Thanks!

Survey link:
http://www.surveymonkey.com/s.aspx?sm=p5JgXiwqIjiWvQYVteM0Yg_3d_3d

I want to thank you for that post it was very helpful and encouraging.
You are definitely right about one thing the grieving seems to be
never ending and the fatigue is the worst. My doctor has prescribed
Provigil for the fatigue because I am having no energy for anything. I
am just waiting for my insurance to approve it.

I'll be contributing here less as I  don't own a computer so I can only get to
one either bi-weekly or when at my Dr.s office. Will have access till Monday and
then maybe a couple of days next week.

Take care and thanks again

Laura

This information was all very informative. Not too scared anymore to have a
baby.

Thank you so much,
Jammie

There was an Italian study that showed that the frequency of relapses in R-R MS
was reduced in pregnant women.  See Italian MS study and
pregnancy at: http://tinyurl.com/5asvuo

I mentioned this to my consultant and he said that the effect wears off
at about 8-10  months post partum :(

*Any* respite has got to be a good thing! I hope it all goes well for you,

Hugs,
Jayne x

On the upside, most of the time MS gets better while you are
pregnant - so much so that they are looking at it for studies.

Good luck!!
Lauri

Hi,

The pregnancy advice from the MS Society in the UK is at:
http://www.mssociety.org.uk/about_ms/symptoms/womens_issues/

And some health info about Rebif & prenancy is at:
http://www.neurology.org/cgi/content/abstract/65/6/802

These give two sides of a coin and, as in most things to do with MS and,
especially, with having a baby, get as much advice as you can but it looks as
though there is usable information about a successful route out there somewhere.

Whatever happens, I wish you both the best of luck

Hugs,
Jayne xx

Glad to hear things are going well for Prairiesky and that she finally has an
appointment for an MRI. Give the Lunesta a chance to work.  Sometimes it takes a
little while before you notice any real progress.

Best wishes,
Robin

Hello everyone,
I was dx in March of '99, I currently am taking Rebif. I am 32yrs old
and live in Germany. I am happily married to a wonderful man. I have two
children from a previous relationship and we want to have a baby.
I am scared though because I don't want my MS to progress. Has anybody went
through the process of stopping your treatment and restarting after the baby is
born?

Best regards,
Jammie

Hi!

Well I did go to the doctor yesterday, and now starts the list of
appointments to keep! I have to get an MRI later this month and see both a
neurologist and an ophthalmologist. Also she wanted to put me on Lunesta to
sleep.  She said that it is a vicious cycle of pain, if it is keeping me awake
at night and then the exhaustion can make me vulnerable to pain too.  I had my
first dose last night.  I still did wake up in the night, but I guess it was
easier to get back to sleep.
I too have more issues on the left side of my body.  Also I am left-handed.

Thank you for your correspondence.
Best wishes to!
Bonnie

For all who suffer aches and pains on a continual basis, I have
found Arnica Gel to be a wonderful temporary relief!  I broke the
tip off my elbow 2 1/2 years ago and ended up with a pin and 2 wires
in my elbow. I have gone through several tubes of Arnica.  I have full
use of my arm, due to being able to exercise. I rub some on my shoulders
my neck or any place that could potentially keep me from sleeping at
night.  I sleep like a baby! Try it!! They sell it at natural food
stores.
Best wishes,
Robin

In answer to your question about the cane: It was pretty easy to
get used to, and nowI always have it with me.  I had to sing in a group
in a large church on Sunday, and I was a little self conscious about
the cane for a minute, but I got over it!

My left leg is weaker than my right, but my balance is getting a little
better now. I hope you get some concrete answers when you go to the
doctor on Tuesday.

Best wishes,
Robin

Thank you Kai!

I know I have not been the persistent patient in the past, but realize
my need now. Thank you for the good wishes and sharing your thoughts with me.

Thank you for the reply!  I am eager to try some of those natural remedies too. 
I think I should hold off just til I see what my doctor wants to do Tuesday.  As
I understand it, it seems that if she would order an MRI, that would be the most
definitive way to diagnose MS.

Partly, my health has deteriorated because of my own lack of follow-through.  It
would seem in times gone by that the symptoms would not persevere past a few
days to a few weeks and it started to make me feel like it was " all in my head
" for how if I did go to the doctor, their immediate investigation turned up
nothing.  But this has been a continued worsening now and between the profound
fatigue and the excruciating pain, I am not doing well at all.  And I actually
wonder when I go to bed at night, and the pain is so bad, if I will even be able
to get out of bed again.

I see where you walk with a cane.  This may seem kind of a dumb question, but is
it hard to get use to that?  Do you have one leg that is stronger than the
other?  My left side for everything is the worst by far.  And I was wondering if
a cane is what helps when you have one side stronger than the other.

I am glad for an online community where I can ask these questions and also know
that there is understanding.  I wish you comfort and strength day by day!

Bonnie

Bonnie Kim's symptoms certainly sound like they could be due to MS but, and it's
a big but, MS is the great imitator and there could be other explanations.
Fortunately, these days MS is easier to diagnose. I would certainly ask your
doctor to investigate further. It's important to get as early a diagnosis as
possible as the medications available now should be started as early as
possible. Be your own best advocate and persist.

Good luck and please keep us posted.
Kai

Just wanted to say welcome to the group. Your symptoms sound
alot like thge ones most of us experience in dealing with ms.
It seems like everone has a different combination of symptoms.
One of the ways I deal with fatigue is with vitamins. Sublingual
B12- 2500 mcg. helps me with memory and concentration. One a Day - Energy All
Day works wonders against fatigue. (the green bottle). I take prescription
Baclophen 3x daily as a muscle relaxer. I walk with a cane. I've been on the
Beta Seron shots for 7 years. They've worked wonders in slowing down the
progression of ms. I take Acidophelus to help digest my food.  I take rest
breaks when I need them...I don't push past tired!...even if it means saying
NO!!

I wish you the best!!
Robin

Hi All,

I have not been diagnosed yet with MS.  I suppose that it may seem premature to
join a group then, but I have and have had for so many years, many of the
symptoms of MS.  I really never followed up with doctor appts. for many of the
things that would happen to me.  But for maybe even fifteen years, I have had on
again/ off again very noticeable to me, weakness in my left arm and then maybe
about five occasions where I lost all strength on the whole left side of my
body.  Of those five occasions, three times I did go to the doctor, for ruling
out stroke or heart issues. And they did.

Also in the past year and a half I have fallen three times.  Spraining my left
ankle twice.

One time too, I got up to walk and could not navigate.  I could not help but
veer and that against the wall.  I was quite scared by that, and went to the
doctor later that week.  They did a CT scan but it was normal.  The thing is
that over the past months, I have had such an unrelenting fatigue and pains,
times when it feels like I have elastic bands gripping my chest and also waking
up in the night with what feels like fireants on my feet and traveling up my
legs, kinda like electricity.  I have become clumsier too.

For years too I have trouble yawning, meaning I yawn like crazy.  I can't help
it.  I try chewing gum to keep from yawning sometimes.

Oh and back about three and a half years ago, I woke up one day with my eyes
feeling sore and the pain increased and I actually lost my vision for two days. 
I went to the Urgent Care and the next day follow-up with an ophthalmologist and
he said I had corneal dystrophy.  Since then, I have had times when my eyes just
are so sore and the sockets too, and also the muscles pull at times, making like
a rippling feeling.

I did go to the doctor this January and some lab work came back with a somewhat
elevated liver enzyme.  But the rest of the tests done, satisfied my doctor that
I did not have hepatitises or cancer or whatever.  Then she said that maybe I
had mono, and I said, "Oh, yeah...I feel kinda like that, cos I had such a very
severe case of that as a teenager."  But then she ruled out mono cos she said
you only get it once.

But cos of the pain, she gave my cymbalta, but it has not helped at all, and
certainly has not helped with the fatigue.

I have tried to figure out what all I should do to be a good partner in my own
health care, so I went online, and many of my symptoms seem to be those of MS
when I enter them in search engines.  I am a little nervous though.  Cos I feel
that some of the stuff seems so elusive and non-descript. And could just be a
culmination of aging or something.  I don't know, I might not have even written
all the stuff here, but go back to my doctor on next Wednesday, the 8th.  I
wonder if y'all think I have a valid profile to investigate the diagnosis of MS.
And if so, what all should I say and what all should I expect?

Thank you so very much for all your help as I believe it is good to talk to
others about these things.

Kind Regards,
Bonnie Kim

Hi,
I was diagnosed back in '98, but I'm pretty sure had MS for much longer than
that. My own MS is more relapsing-remitting than any other type (although to be
honest I'm so used to some of the symptoms that I donšt count them anymore), so
this may or may not be helpful. I prefer when the people in my life take my MS
as seriously as I take it. But my mind is sound and my judgment is fine. Is this
something that you can have a conversation with your mom about? Use your own
disability as a guide. I bet there are things youšre willing to let your family
know about life as a quad, and there are things that you want to handle on your
own. And there are probably things that you should take more seriously that you
just don't.

My own mom has advanced heart disease and also macular degeneration. She used to
harp on me about my decision to not try anymore of the CRAB meds (I tried three
out of four), unable to understand how an intelligent, educated person would
choose against them. Until her own diseases began to progress and she found
there were some treatments that she didnšt want to do, or wasnšt ready to do.
That was when we were able to actually have a conversation about what we were
each going through, and only then. Go figure.

Anyway, I hope this helps.
Josie

I am Melissa.  The group description said it is for anyone open to
with an interest in Multiple Sclerosis.  I have interest in this
matter.  I was certain (that is the way I felt) that I do not have
it.  I have been questioned about whether I have it or not and if I
have been tested by 2 - 3 doctors (ER), due to my symptoms and my
MRI's they have on file.  I may have some long posts showing my MRI
results.  I know this is not a site to diagnose or be used as so for
such purpose.  I just want to share with everyone what I am going
through and see what you think.

I am 35 years of age and it all started over 10 years ago with just
an intense headache.  I was dizzy, off balance, slurred speech, and the head
pain was so intense it made me sick!  I went to the ER 3 days in a row in hopes
to get some help, due to the intensity.  I was in Indiana at the time.  The
first day they just said migrane and sent me home, the second they did tests and
nothing.  the 3rd they did another CT & then a spinal tap.  They compared the 2
CT's and determined it was a brain tumor. Okay, I will not get into the whole
story - it would be a small book.  Anyway, over the years I have had more and
more symptoms.  I have some symptoms this day that are there and then not and
there again. Some that are there always and just okay and then horrible.

I am in pain constantly.  I was diagnosed with arnold chiari type 1
and had surgery for it...the pain still here and the symptoms too.
The doctors have chose to ignore and NOT LOOK at my MRI's over the years until I
had to show one of them the MRI's the second time.  He was stunned and said he
can't wait to see my next one (when all they do is the same exact one over and
over again).  They show lesions, the tumor, the chiari, etc.  I am wondering now
with my symptoms if I was wrong about the possibility of having MS.

My list of symptoms:
Headaches - everyday (somedays moderate, some severe)
Back of head pain
Neck pain
shoulder pain
back pain
leg pain
arm/hand pain
numbness in the face, arms, hands, feet, legs.
tingling in the face, arms, hands, feet, legs.
burning in my foot and arms & hands (was just one arm now it is both)
dizziness
nausea
vomitting (was constant, now just occasionally)
Have passed out a few times
Trouble walking - it is at times, like it comes on pretty strong then
just kinda lets up a bit.
lightheadedness
anxiety - with chest pain, etc..
(then had some depression for a short time - due to being sick of
being sick and not getting anywhere with what is wrong with me)
slurring of my speech
sometimes stuttering of my speech
lack of concentration
poor memory at times
some vision problems
balance issues (kind of goes along with my walking issue)
problems sleeping
fatigue

I am so sick of being sick.  I just want to feel better.  I will share with you
my MRI results.  Like I said before, they keep doing
the same over and over recently and not of the correct regions and
will not compare to my other ones.

Thanks for letting me share.
Melissa

Hello everyone. My name is Lisa and I joined this sight to get more
information about my mother who was diagnosed with MS in 1984. I
myself am a high functioning quadriplegic, hence my user name
alaskanquad.

To make a long story short, my parents (mom is 66 and dad is 80) are
very independent and have always taken on her condition on their own,
going to appointments and so forth. But now my sister and I have
realized that we should have been more involved because our parents
were not really pressing the doctors for anything. For instance, I
just discovered that my mom has no idea there are different types of MS.

Anyway, a new situation had arisen. Five years ago it was discovered
she also had an acoustic neuroma, a type of benign brain tumor. At the
time the Dr. at the Mayo clinic told my parents that surgery would
absolutely aggravate her MS and that radiation was the only option.
Well, the radiation did not work and now the tumor is back and the
only solution is surgery.

My question is how concerned about her MS should we be? We do have a
consultation appointment with a neurologist scheduled. I know everyone
and every situation is different and that she is considered to be in
the early stages of advanced MS. I understand it is a very broad
question - I am just curious if anyone has some major red flags from
experience.

Thank you all so much. And no, I am not a lurker :)