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

My daughter in law was diagnosed with MS year.  They married this summer.

She is not handling things well.  Right now she is catherized and just laying
around all day.  As the mother in law, I am not sure what I can do but be
supportive of my son.  I want to help but not sure how.

Since I don't have MS I really don't know how she is feeling.  She is young and
I really feel sorry for both of them since this isn't the best way to start a
marriage.  We were hoping after the wedding things would get better but so far
it seems like she is getting worse.

Her employer told her to stay home until she was feeling better.  I am not sure
how she was acting at work, whether they are being kind or just didn't want her
there.

Any suggestions you can give me would be so helpful.

Thanks

I was just diagnosed with ms. I am only 26, it seems crazy.  My doctor is going
to start me on Copaxone, just curious if anyone is on that and could give me
some feedback. O am really nervous bout doing shots and side effects

Gena

I'm Gina, I'm 24 and was diagnosed with MS 4 years ago and if I was John I would
definitely go for the second MRI scan, when you have MS you are supposed to stay
away from stress, heat, infection and tiredness and I am sure that all these
symptoms have you stressed out, it can't hurt to have the second MRI scan done.

best of luck,
Gina

I'm sorry to hear about John's yet-to-be-diagnosed condition. It might be worth
asking if it might be Ménière's disease - see
http://en.wikipedia.org/wiki/M%C3%A9ni%C3%A8re%27s_disease as a friend of mine
had this and it took them over two years to work out finally what it was!
Fingers crossed that you sort this out soon

Hugs,

Jayne

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

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

Hello, beginning back in January of this year I started having problems with
balance and light-headedness. When I turned my head abruptly the room would
shift and when I walked one foot would feel like it was sinking. I also had
continuous headaches, not too painful, but lasting all day beginning in the
early morning. I was frightened by this and ended up in ER a few weeks later.
They did bloodwork and MRI, all good. Over the last few months, the balance
issues have continued on and off while walking but have disappeared so far as
turning my head. The headaches have also subsided. I felt like I was slowly
improving, however, many other symptoms have since developed, such as a pulsing
feeling in my back and torso mostly when lying down, strong enough at times to
jolt my whole body. I also feel this when going to the bathroom, like a shiver
going up and down my spine. Also, muscle twitches all over my body, trembling
mostly at night, slight pain and weakness in legs. I have had an EMG, BAER, MRI,
endless blood tests, thryoid check and all has come out good. My neurologist
said nothing is wrong, it is all psychological (except possibly original balance
problem) and prescribed me 10mg peroxetine for anxiety. I took that for almost a
month and then begun having the tremors in legs and arms (never had these
before). I stopped taking it (all at once) and the tremors went away for several
days but now have returned, though not as violent as before. I got a referral to
a 2nd nuerologist who suggested a 2nd MRI if symptoms persist. He is the only
doctor who has thought this necessary, including primary, other neuro, ER's
docs. I already have huge medical expenses and am wondering if I should do this
now or just see how things go for a while? I feel like the balance is improving
somewhat but the other symptoms are getting worse and I am scared and feel like
something bad is going to happen soon. Not sure if MS or ALS or something else
entirely. Or could just be inner ear infection which caused the balance issues
and anxiety/depession that has triggered the rest, as doctors seem to think. I'd
like to believe this, but seems like there are just too many symptoms now. It
feels like something serious is wrong with me. Can anyone give me some advice on
this? It has been 6 months since first MRI/MRA of brain. Did not have MRI of
spine. I am 35, male. No previous health issues. Was happy with my life until
all this started.

thanks, John

Thanks yall for the helpful hints. I will have to try them!!!

Ask your Dr. about Modafinil for the fatigue. I don't know about the sleeping
part, as I don't have that problem, but I'm sure your dr. could help you there
(the only things I know are the usual, warm milk, counting sheep, LOL). but ask
about Modafinil, it should help. Being a stewaress, you can't afford to be
without energy. My aunt was a stewardess on PanAm (she doesn't have MS, I do).

Diane in WV

There are two drugs that will help tremendously with your fatigue. One is
Provigil. It is a drug prescribed for narcoleptics to help them stay awake. It's
off lable use is for MS patients to help them manage their fatigue. If it gives
you a headache, cut it in half. It does work.

The other drug is 4-aminopyredine. It's a compounded drug and is not covered by
my insurance, but is very inexpensive. I get it through  Skip's pharmacy in Boco
Raton, FL. They are the cheapest I've found and deliver it to your door. It's a
nerve enchancer. You can take up to three a day. I find that one does the job.

Your neurologist will be familiar with both of these drugs.

I was just diagnosed about 2 months ago. I am 22 years old. I am a flight
attendant and I work a ton! I have been having some issues lately with fatigue.
I am so tired all the time. I feel like I don't sleep anymore. Does anyone take
any kind of vitamin supplement for energy? Thanks!

~ Andi

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

http://unravelingms.blogspot.com/

http://www.mssociety.org.uk/

http://ms-news-channel-3.blogspot.com/

I was dignosised with MS little over a yr ago. The drs think I've had it for
some yrs though. I'm getting started with a nuerologist next month. It's like
I'm having a flare up because for the past 3 days my muscle pain has been very
unreal and so I'm so weak.

Hi my name is Susan and I am new.

This week I will be having my MRI to see if my meds are working.  I am on Rebif.
If anyone uses this I would like to here how it is working for them.

Thanks

Hi all

My name is Aoife and I live in Co. Clare, Ireland. I was diagnosed last
April at 15 after having 3 relapses in 4 months. I've been put on
Tysabri which has been great, I haven't had a relapse since I was put
on it and I've experienced only mild symptoms like muscular spasms,
pains in my fingers (that's a weird one. Has anyone else had that?) and
occasional mild fatigue.

Lately I have been having some bladder symptoms but these have improved
hugely since I was given Detrusitol. Altogether I've been feeling
pretty positive about the whole MS shebang and my family has been
amazing, even my little sister who found my falling over infinitely
amusing.

Hello to all.

A little bit about me. I'm 44 years old. I've been  married to my beautiful wife
for 25 years we have to children one 23 one 21.. And a 1 year old grand
daughter. I was diagnosed on 10/4/06 with M.S. I'm looking to find someone that
has gone completly deaf as I have from M.S. I lost the hearing in my right ear
first then a few months later my left ear. I have the numbness in my arms and
legs as well as complete loss at times. I'm planning on trying the cochlear
implant. Here in Missouri they have not dealt with a case such as mine the
doctors don't know what the success will be. So im reaching out to find all the
imformation I can. Thanks for all your help in advance.

GOD bless.
Pete

Hi everyone!

I am new here and joined this group because my daughter-in-law was just
diagnosed with MS. She is only 20 yrs old and I want to learn about
this illness so that I can encourage her. I know nothing about this
disease except that there seems to be no cure. Hopefully, for all of
you out there, someone can find a cure soon. I plan to lurk awhile and learn
some things. I'm glad to be here but not happy about the reason I need to be. I
hope everyone has a good, pain-free day!

Blessings,
Debby

Hi

My name is Aoife and I was diagnosed 8 months ago at 15. I've been on
Tysabri for 7 months and it has been really great. I have very active
MS - I had 3 relapses in 4 months before diagnosis - but I haven't had
any relapses and only mild symptoms since I was on the Tysabri,
although I have had some bladder symptoms recently. I've also had some
vertigo but I think this is because I was doing yoga and stupidly did a
handstand :)

I had some reservations about Tysabri because of PML, which is a
possible side-effect of Tysabri. It's a dangerous disease which can be
life-threatening :  however, the chances of getting it are extremely
slim and if you start Tysabri treatment you will be fully informed
about PML and its symptoms - if they catch it early it's very treatable.

I hope this helps. My experience of Tysabri has been extremely positive.

Aoife

I have been with a neurologist in the Stanford University area/hospital, who
does specialize in MS, for all this time. I was diagnosed with
relapsing/remitting MS 25 yrs. ago. My flare ups happened about every 3 yrs. I
have had all the tests. Spinal tap, numerous MRI's. Have been on prednisone
which really did nothing for me and I suffered no side effects. The pain I have
is known but is not "usual". My doctor says this may go away. Of course I told
her I don't believe her. I feel so awful I went to a site called Patients Like
Me and the drugs I'm taking are all there and more! The only time I am not in
pain is if I manage to be sleeping. As soon as I move "it's back". It has not
always been this way. Only for about the last year and a half. It is a
disappointment to wake and realize that I am still here, still hurting and
having to endure yet one more day.
 
Freebie

Hey Freebie,

Sorry to hear about your downward spiral! I hate to suggest another
medication on top of all you're taking but what about getting on a
stronger med like Novantrone or Tysabri? I've been on Novantrone now
for two years and haven't had a relapse. I was on a downward spiral
before this and my doc suggested we go to a stronger drug. I know the
popotential side effects are scary but they are rare and they check
carefully before each dose for any possible side effects, with
Novantrone anyway.

Kai

Freebie have you actually been neurologically diagnosed with MS. The
ABC-T drugs, one of which is Avonex, are the treatments of choice for MS but the
narcotics you have been prescribed seem a bit unusual. Spinal fluid tests,
visual acuity tests, MRI's while not always positive can indicate the disease.
Methyl prednisone is also a standard treatment but you did not mention anything
but pain meds and Avonex. Without more information it is difficult to know
whether you have repetive/remissive or chronic progressive MS but if you have
had an undiagnosed problem for 20 years it can't be chronic progressive. I don't
know where you live but I suggest seeking out a neurologist who specializes in
MS and get a more definitive diagnosis through more MS specific testing. MRI's
highlight brain and spinal lesions although not all MS sufferers have abnormal
numbers of lesions most do. Fibromyalgia can mimic MS symptoms to a fair degree.
I strongly recommend that you do further research with an MS specific
Neurologist. Chronic pain is not a common symptom of MS in my experience. I have
had R/R MS for 20+ years and have fortunately J had the "standard" exacerbations
and resulting reduction in nerve transmission associated with the loss of
myelin.

Best wishes and good luck
Bob

I have had M.S. for 25 years. For 20 of those years no one was aware of
my disease. I appeared "normal" to the outside world. For the last 5
years I have been in a downward spiral. I suffer from chronic pain and
am on so many drugs it is alarming. Methodone, dilaudid, vicodin,
valium and neurontin to name a few. I also take Avonex injections. I
feel like I am drowning out here all alone. This is my first attempt at
trying to find some support.

Freebie 1952

I am searching for MS patients living in Canada for market research
interviews being conducted by Ipsos Health - see:
http://www.ipsoshealth.com

The purpose of the study is to get a better understanding of MS
patients' experiences with treatment and with the support services
provided by the pharmaceutical companies, with the intent of better
meeting patients' needs where possible.

Interviews last 45 – 60 minutes and participants receive $125
immediately after participating in the session as a token of
appreciation for their views and opinions.  Those participating over
the phone will receive a cheque one to two weeks after their
interview. If you choose to participate in person, the office is
located in Toronto in the Yonge & Eglinton area.

All information gathered as part of the study will remain confidential
and summarized in aggregate form; no information is ever linked to an
individual.  I am a member of the Marketing Research and Intelligence
Association and adhere to its ethics, confidentiality, and privacy
policies.

Kind Regards,

Andrew Udell, President
Sharper Insights
1.888.770.7742 Toll-Free
andrew@...
http://www.sharperinsights.com

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

Hello -

I have taken large doses of prednisone  when  I have an MS
exacerbation.  I prefer the oral prednisone rather than  IV
treatments.  The oral works just fine - and I do not handle IV well.

I have just gone through an exacerbation.  They are never easy, but the
treatment does work.  I have had fewer exacerbations since I started
daily Copaxone.  Maybe someday a cure will be found.  Keep praying.

Loni

I was on very long courses of prednisone a few times.
Fun, fun it was NOT!

Josie

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?