I just read in the MS support group that only a 1/3 of MS patients respond to
A-B-C drugs so I think treating the underlying problems is more important then
treating the MS. Since they can't cure the MS why
play with a drug that is made by a synthtic chemical?!

thanks for your thoughts about my wife. I just want to see justice done and my
son taken care of, and yes, it will all work out in the end.

luv and peace
LOU

Hello,

Every therapy is good for different patients. I think that interferon based meds
have more side effects linked to them. But if it works for you its great. I
personnally would suggest everyday treatment, read about it and you will see how
mild side effects are.

I agree with bubbina_1999 to a degree. Docs are taught how to appreciate Rx
companies, bxs of free treats and freebies that they provide ever since the time
of med school, so they will always be on their side. Rx is multibillion-dollar
business in US and there is no reason to strike against it. By the way, medical
field in US is a business in its entirety. Private practices strive on drug
reimbursements etc. Non-profit hospitals are also concerned about their profit;
otherwise they would have excepted patients with any type of medical coverage.
Congress does not want to change our healthcare system in anyway, so anyone who
looses his/her job can claim bankruptcy bxs of lack of decent backup in
healthcare coverage, but anyone can spend a fortune on his/her cobra benefits
for 18 mnths. I think that it this age of technological progress and
developments in the research its time to figure out why do we get MS. Perhaps
scientists ask wrong questions, and look in the wrong places in their research.
Why most of the patients with MS are allergic to dairy and over 100 other
products? etc.

OM

I met a lady who is going through chemo treatment for MS not for cancer. She's
happy about it but I personally wouldn't want it. You can ask your Doctor if you
want more info.  As for me, I'm on once-a-week betainterferon.

Diane in WV

I don't usually post here, but I do read these posts.

I've been holding off doing the shots for 9 years and I still get around albiet
with a cane.  According to the most recent issue of  NMSS's publication "Inside
MS" 50% of people with MS are not on the ABC or R. I have many questions that go
unanswered by mainstream medicine.

Also, the drug companies don't make any claim about preventing further
progression.  They only claim that it may help delay progression of disability
and frequency of attacks in RRMS.
I realize this is an extremely controvercial subject, but not all of us buy into
the drug companies (and that doesn't make us bad people).  I have a 9 year
history of some seriously negative situations with the medical profession and my
MS actually being made worse after I received a tetanus shot.  Of course, no
doctor wants to acknowledge this.  And they don't!  I've just gone through the
legal process.

I know that science can do much better if the drug companies didn't have their
mighty dollar driven agenda.  Too little research makes it pretty obvious.  
More dollars go into one football game than has gone into MS research in the
past 56 years!  Why is that?  I feel like we're just cash cows.

I know this post opens me up for all kinds of critical comments.  But believe
me, I can take it.  I have a 10 page word document, entitled, "Finding Hope in
the Truth", that I wrote last year that was printed in two publications.  As a
result, I was a guest speaker at an MS support group this past February.  There
was one person who walked out before I had finished.  That person was an MD.  He
could not handle that there was someone actually going against the grain.  The
support group leader was very pleased that I had rattled his chains and actually
struck a nerve.

We need better, folks, lots better.  Let's call it like it is.
I am not trying to offend anyone here, but there are people like me who have a
totally different view of "treatment" and my view counts just as much regardless
of what any MD has to say.

Hi Lou ~ I was diagnosed in 1989 as well. Progression was slow for the first
several years but I tried Avonex for a year. I didn't respond to it very well.
Had flu-like symptomsmost of the time. Chose not to continue as I ended up
relying on a wheelchair. I try to exercise with a Theracycle and chair arobics,
etc. If the meds work for some, I'm happy for them. I think I'll continue to
treat the symptoms and thank the Lord for every day, good or bad :>).

Sorry to hear about your wife.  Hope you are doing okay!

Warmth and Peace,
nanababoom

Hello,

Another new member! Was given diagnosis 4-25-2005. Optic neuritis
back in Dec. 2004, 3 MRI's later, have 1 active lesion on spine & 1
active on brain. Was told like some other's I've read on here to pick between
ABC's.I was thinking of Betaseron & was wondering if there were opinion's out
there ~ good or bad??? Or any other option's that are preferred.

TIA - KT

Hi there,

I've had MS since 1989 and was on Beteaseron when it came out, also was in
trials. When I moved to VA the Doc put me on Copanoxe, but last week the doc
took me off of it. I think that I am better off without doing shots everyday
because I cannot see any difference in my health and the doc says there's no
proof except what the drug companies say and that's not good enough for my mind.
It's your body and its not like a car that a new part will make it better.

peace and hope
LOU

(also to let some people know my wife was murdered last month so having MS is
not such a big thing comapatively)

I suggest that you don't hold off on starting treatment!!  The current standard
of care in MS suggests that you should be on one of these drugs ASAP.  This is
thought to be the only way you can prevent further symptoms!

gcd

Yes, yes, yes.  You will get people wanting to explain away your symptoms. The
most common I have found is "Well I (or someone else) have that symptom and it
is-----just age, or stress, or etc."  It's hard to hear because you feel like
they aren't taking your disease seriously.  I guess it's important to know that
they are probably wanting to deny that you have MS because they care about you.
I started on Copaxone three years ago and my exacerbations have dwindled down to
nothing!  I'm so pleased.  Of course I don't know that it's the drug but I'm not
going to stop it!  Copaxone seems to be the least problematic and the latest
studies they have done show that in the long term it seems to be decreasing the
number of brain lesions that occur.  I did try Naltrexone. Many people say they
have had great results but I didn't notice a difference.  I also got hooked up
with an allergist who thinks that episodes are triggered by allergies.  He said
I was highly allergic to many things. I took the shots he recommended and got
the air purifiers, etc, but didn't notice any difference in my symptoms or
exacerbations at the time so stopped all that except for staying off milk and
all milk products.  He claims that his studies show that a high percentage of
people with MS are allergic to milk.  That may contribute to my success but I
don't really know. Good luck with your journey.  I've heard that many
researchers think MS may be several different diseases so different things work
for different
people.

I understand how you feel, I was diagnosed in September of last year and since I
have multiple family members with the disease, Everyone has been through
everything I'm going through, although I have more lesions and more sympothoms
than both of the family members that are closest to me.  It is in their nature
to try and minimize the effects of M.S., It means they love you and are afraid
to face the illness, it happends more than you know, be patient and they'll come
around.  As for putting off the drugs, I wouldn/t for too long, an interferon 
helps tremendously, I take avonex one a week.  when I miss my shot, I definately
feel it.

best of luck,
Heather

I am new to this chatroom and was diagnosed July 1, 2004. Since my diagnosis, I
haven't done much as far as drugs. I would love to know any natural meds anyone
is taking. I am holding off as long as possible on the A, B, C's. I need to hear
from other people who are dealing with this disease. I haven't been able to talk
to anyone about it much because people close to me seem to want to explain my
symptoms away.  Does anyone else deal with that?

I am 27 and a mother of one. I have had a few automobile accidents.
Most recently, was a year ago, I was hit in the back of the head
with a log.(don't ask) For the last year, I have had several symptoms.
Tingle/Numbness in my arms, feet, legs, neck. Tightness in chest. Tingling
scalp. The loss of feeling in my right leg. That has happened four times now.  I
call it my dead leg. I go to walk and it's not there. I literally look at it to
back sure. Horrible migraines. Memory loss. My blood pressure recently has been
around 101/42 to 105/61. Recently, I was diagnosed with Biopolar (rapid cycling)
Just started Lithium. Those are to name a few. Not all occurr at the same time.
Last week I at work. I turned to walk and my leg gave out,it wasn't there again,
I hyperventillated and went into a seizure. I was unconscious for only a few
minutes. Was rushed to er. I saw NR yesterday. I am scheduled for alot of tests
next week.(EEG,brain MRI, MRI of cervical and lumbar region) I am very nervous.
He ruled out alot of things based on the tests I've had so far. He did give me a
starter dx of paresthesia and sycope. But, MS and Lupus run in my family and
they can as well as severe nerve damage cause these symptoms. Any advice would
be greatly appreciated!!

For quite awhile I have noticed, intermittently, that I get pins and
needles, especially if I bend my arm back, (as if I were scratching my back). It
was only in the last week or two that I noticed occasional pins and needles when
I walk (as I put my heel down), but not all the time.

From all that I've heard and read, it seems people have small symptoms that they
ignore for years, because they're infrequent, or because it doesn't seem like a
big deal. When I mentioned the pins and needles to my friend Vivian, who has MS,
she said "you might want to see a neurologist". That's what got me thinking.
Your comments are encouraging, but I guess the only way to be sure is to have an
exam.

Oddly enough, I haven't had symptoms for the last few days, but from what little
I understand about MS, that's not unusual, right? I will see my doctor about it.

Everyone on this board has been so kind - thank you.

The symptoms can be explained by other things besides MS - the hand and arm
tingling could be carpal tunnel syndrome and the tingling in your legs after
walking could be just paresthesias (pins and needles) from the activity and
perfectly normal. I work for a neurosurgeon and he sees these things all the
time. A trip to a neurologist might give you some peace of mind.

Sandy

One of the first symptoms I ever had was numbness in my legs.  Often it felt
like the veins in my upper legs were getting ready to burst. Very painful. Then
the numbness. Don't let your doctor ignore it. Every one of the male doctors I
had just looked at me like I was a complainer. The numbness would really come on
when I was out walking. I got rid of my pride ( old people like me have a hard
time with that..:>) ..)     and now I use a cane for very short distances and a
big fat wheeled walker with a seat on it that is a blessing when my legs have
completely given out. After a little rest, I can go on.

I will tell you what I told my grandson who had a terrific heart disturbance and
was in hospital for a week. Keep saying to yourself..."Every cell in my body IS
healthy and strong". Do not say they WILL be healthy and strong.....say IS....as
of right now. You may not notice an immediate change, but keep at it. Every day.
Write it down somewhere so that you will keep noticing. Stick it on the face of
your computer or TV or near the shower,  whatever you are near.

My grandson is home and doing great, and of course taking all his meds as
prescribed. He is 42...had open heart surgery at age 4. When he went into
hospital last week, his pulse was 150 and his blood pressure very low...we
almost lost him.

Anyway, please try this. You won't have any side effects and certainly no upset
stomach!!! I know this is what helps me to keep going so I can do my own
housework and shopping, etc. Sure I still have aches and pains, but not nearly
so severe as they were...the kind that really shot me out of the sky, so much so
that at times I couldn't raise my arms to get my clothes on. Real bummer times.
May the Great Creator bless you and keep you safe and strong.

Love, Granny Red. (great-great!! )
Hey, everybody..I'm still in there swinging!!!

Your condition might be due to many things but it is very wise to start by
seeing your GP who may well refer you to a neurologist.

I was 48 when my MS manifested with pins and needles in my left leg then
numbness; this was followed a few days later by my right leg giving way in a
London Tube station... just like in the MS Society ad that ran in the UK some
years later!

My GP referred me immediately - on the phone, there and then - to a
neurologist as we both thought it might be a TIA (mini-stroke) and I had fears
that it was a brain tumour... not too many people return from a neurologist
appointment with a grin as I was so relieved that it was *not* a tumour!

In retrospect, my fine-motor control had been getting worse for about five or
six years which is a bummer when you are a writer and musician; I'd also had a
few occasions of mild numbness. All of these still continue but, at least, I
know what they are due to now.

MS or, rather, our faulty brains work in mysterious ways.

I hope your symptoms are nothing serious and easily cured.

Jayne

I'm new to this board. I have a friend who has MS, and I have noticed
numbness and pins and needles on occasion in my hands, and lately in
my legs when I walk (sometimes). I mentioned it to her, and she said I
should see a neurologist. Do these symptoms sound familiar to anyone?

Thanks for any help. I'm totally new to this.

Heidi

I experienced a similar progression over about a year.  I was halted by
lots of chemotherapy (Cytoxan) and steroids.  I've recovered much of what I
lost, and my eyes work decently now, after 5 years since the treatments started.

Good luck to you!

Flash

Hi

Concentrate on upcoming college - this will be an EXCITING venture.
What are you studying?

You can't ignore MS progression, however try to focus your attention on other
things as best you can.  All of us have different symtoms. If you haven't
already done so please try checking out all your Doctor's MS publications to
find out what is really going on. I don't mean to sluff your concerns, but I
personally believe that mind over matter is often the key that keeps the engines
running.

Spring is in the visible future, at last. Try to enjoy ~ and bless you as you
start college.

Happy Spring

Loni

Hi Everyone,

I am still progressing at such a fast rate (compared to what I've seen in the
family members I have) and I have started to wonder, how long before the doctor
says that I am in Secondary progressive in stead of relapsing/remitting, have
you ever heard of someone having progression for a whole year??  It is very
disconcerting.

Also, I am starting college next month and was wondering if anyone has had any
luck with anything to relieve eye sympotoms??

Thanks,
Heather

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There are 2 messages in this issue.

Topics in this digest:

1. symptoms
From: karenahmed
2. MS and medical care.
From: orabinder


________________________________________________________________________
________________________________________________________________________

Message: 1
Date: Tue, 08 Mar 2005 19:29:35 -0800 (Pacific Standard Time)
From: karenahmed
Subject: symptoms


Hi Loni,

Yes i think we all have that numbness and weakness i have just started
using a cane now for stability i was falling a lot and, knew id better use
it before i had a bad accident (we all try to leave it till the very last
minute to pick up that aid to walk) I'm sure we all do this, if i need
groceries i can get away with holding on to the buggy but, if i try to walk
to the mail box 1 block i cant do it now so i take my kids to hold on to or
ill break down and use the cane.

Taking Rebif i get the bad fevers stillafter a year and that burning inside my head does anyone on Rebif get that burning?

Weight gain is my biggest problem since i was paralyzed i gained 25 pounds
and i went off the Gabapentin because my Neuro thought it might be that but it wasn't and I'm back on it when needed now. Could be the antidepressants they put me on when i was put on Rebif who knows or it could just be i cant do much anymore and of course that adds the pounds.

Having a weak day today due to more then likely stress we go for my Husbands
immigration Appeal march 14th and my nerves are shot so i hope all you are
calm and stress free because it really affects MS doesn't it? do you all
notice that?

Well i love being here and talking to you all. Where are the Photos if you
have photos load em up on group photo page at:

http://photos.groups.yahoo.com/group/About-MS/lst

It's neat to put a face to an e-mail! lol

Karen






________________________________________________________________________
________________________________________________________________________

Message: 2
Date: Sun, 20 Mar 2005 01:22:47 -0000
From: orabinder
Subject: MS and medical care.


Is a MS a label for a group of diseases or is it ONE disease?

Why if MS is an immune problem is it treated by neurologists that
do not know much if anything about immunology?

Has anyone with "MS" undergone an IMMUNOLOGICAL assesment in a clinic
that specialises in immunology?

In the June 2000 issue of immunology a group of scientists in Europe
found that there are at least 4 different types of lesions. These were
grouped into 4 groups. The lesions in one group were similar but not
the same as in the other groups. The conclusion was that there are at least 4 different factors causing thoses different lesions. Viral, bacterial,toxic and possibly autoimmune.

Anyone interested in discussing?








________________________________________________________________________
________________________________________________________________________


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My major problem is my eyes want to shut (tired), and I don't WANT to go to
sleep (do I sound like a kid? LOL) I used a cane till I fell, my legs tend
to cross , I have a walker, but I only use it to get to the car (not right
next to the house), and usually use grocery carts to get around in stores.

If you're an American citizen, and your husband is not, doesn't that made
him eligible to stay no metter what?

As for as why we go to neuros when it's an imune type disease (they
think), I have NO idea.

Diane in WV

Is a MS a label for a group of diseases or is it ONE disease?

Why if MS is an immune problem is it treated by neurologists that
do not know much if anything about immunology?

Has anyone with "MS" undergone an IMMUNOLOGICAL assesment in a clinic
that specialises in immunology?

In the June 2000 issue of immunology a group of scientists in Europe
found that there are at least 4 different types of lesions. These were
grouped into 4 groups. The lesions in one group were similar but not
the same as in the other groups. The conclusion was that there are at least 4
different factors causing thoses different lesions. Viral, bacterial,toxic and
possibly autoimmune.

Anyone interested in discussing?

Hi Loni,

Yes i think we all have that numbness and weakness i have just  started
using a cane now for stability i was falling a lot and, knew id better use
it before i had a bad accident (we all try to leave it till the very last
minute to pick up that aid to walk) I'm sure we all do this, if i need
groceries i can get away with holding on to the buggy but, if i try to walk
to the mail box 1 block i cant do it now so i take my kids to hold on to or
ill break down and use the cane.

Taking Rebif i get the bad fevers stillafter a year and that burning inside my
head does anyone on Rebif get that burning?

Weight gain is my biggest problem since i was paralyzed i gained 25 pounds
and i went off the Gabapentin because my Neuro thought it might be that but it
wasn't and I'm back on it when needed now. Could be the antidepressants they put
me on when i was put on Rebif who knows or it could just be i cant do much
anymore and of course that adds the pounds.

Having a weak day today due to more then likely stress we go for my Husbands
immigration Appeal march 14th and my nerves are shot so i hope all you are
calm and stress free because it really affects MS doesn't it? do you all
notice that?

Well i love being here and talking to you all. Where are the Photos if you
have photos load em up on group photo page at:

http://photos.groups.yahoo.com/group/About-MS/lst

It's neat to put a face to an e-mail! lol

Karen

Hi,

My name is Karen i live in Canada. I was diagnosed last year with
RRMS, I take Rebif injections along with other medications and
vitamins. I have 2 young Sons and my Husband has been stuck in
Pakistan for 18 months now. I have high hopes there will be a cure
one day for MS but, till then im a positive thinker and try to keep
moving as much i can. I suffered a bad MS attack and lost all my use
of my right side but, have gained back 80% of that use now. I was
very happy to meet Terri Garr on the weekend who to has MS so I'll
post some pics of that soon.

Looking forward to meeting you all.

Karen

Was happy to learn that I wasn't the only person affected with
unpleasant symptoms with Avonex.  The numbness and weakness in legs has
never  gotten better for me.   Periodic treatment with steroids helps a
bit....but we all know the steroid route has consequences.  Double edged
sword, they say.  Hope you are doing okay, Karen.  I read your journal
notes and could relate about 90%+.  Thanks for sharing.  Loni

I'm sorry to intrude but I'm hoping one of you can help me. I'm a
producer on a public radio show in Los Angeles called Weekend
America. We're looking for people who have been taking Tysabri and
would be willing to talk about their experiences and what this
decision means for them as well as all people who suffer from MS.
Was the drug really the great hope?

If anyone is interested please email me with contact details at
my phone# is 213-621-3549

Looking forward to hearing from some of you.
Thank you for bearing with me.
Best Tinku

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Loni et al,

I tried Avonex back in late 2000.  I have been keeping a MS diary since I
was diagnosed 10 years ago.  Below are my entries when I was taking Avonex.
It wasn't good for me, I was attending the gym before I started and was
feeling great.  Since my Avonex experience I haven't been back to the gym
and I think I became much worse for it as well Loni.  As my doctor said 'the
cure is worse than the cause'.  I know someone in my neck of the woods who
feels the same.  Karen

Yeuk – Dec 16 2000
I was feeling sick.  I had the ‘flu, coughing, sore throat, fever, tired,
headache. I think each Avonex injection was somehow making things worse, maybe
because it impacts on my immune system and gives me fever and headache.  I take
Panadol for this and they upset my stomach. My legs were starting to become
numb, from the feet to just above knees, and I was scared.
Suggested to the doc that I start on some Predisone tablets – 20mg 3 times
a day for 7 days, then pettering off.  I found this treatment in a medical
book, its what I had when I first got optic neuritis in 1993 but haven’t had
it since. It seems to be working, numbness has reduced in my legs, so I’ll see
what things are like when I go off the pills.

Update – 24th Dec 2000
Its great I have injected myself because now I don’t need to go to the
doc’s for it. The fever and headache side-effects are still bad.  Last time I
tried 1 extra-strength Disprin every four hours and my stomach seemed better
(rather than Panadol). This advice from Denise the Avonex rep.  I won’t really
know if the Disprin is effective enough for the headaches until I come off the
Prednisone.

Update – 15th Feb 2001
I realised the Predisone helped reduce the Avonex fever after the shot
when I was taking it in Dec. Last fever-reducing regime = 5mg Predisone, 2 x
300mg disprin before shot, 2 disprin through day, 5mg Predisone, 1 neurofen at
night, same for next day. The side effects never really diminish over the week.
I reduced the last injection by ¼ (8th Feb) but this didn’t help with the
side-effects.  I reduced the dosage because on 18th Jan I lost ½ the dose
before I injected it and the side-effects weren’t as bad. On 10th Feb I had a
cold bath to cool down my body and it DID function better until it become warm
again. Some other side-effects are: all past MS problems flaring up, making it
difficult to walk (because of balance mainly), weakness and fatigue, hair
loss, sleeplessness, feeling a little depressed for no reason, dry mouth,
hot body, dry skin, period starting 1 week early and going for one week
more, numb and weak legs. I missed the injection today (15th Feb) because I want
to know if it’s the side-effects or the MS.  I won’t take it for about a month. 
I’m tired of taking all the fever-reducing pills as well and want to give my
body a break from them. I started using a cane/stick to help my balance.



Update 19 March 2001
I’ve missed 5 injections.  After missing the second one my skin cleared
up, I was able to sleep better, periods are back to normal, balance is much
better, feel better in myself. My mouth is still dry so Avonex must still be in
my system. I’ve just had a small Prednisone boost from doctor (20mg x 3 for 5
days).  This was more to tide me over until the Methypred treatment at the start
of April.  Will be interesting to see if MS symptoms are better than when I had
Prednisone when I was on Avonex. My legs are still a bit numb and are still
quite weak.  Am just going to take it easy for a week, have a break from all
medication, rest up etc.  Had a busy week last week so am tired from that. Mouth
is very dry from Prednisone (probably because Avonex is still in my body).

Biogen Idec and Elan Corporation on Monday suspended sales of their
much-heralded new multiple sclerosis drug Tysabri after a patient died. The
companies based their decision on one confirmed fatal case of a condition known
as progressive multifocal leukoencephalopathy, and one suspected case of the
condition. The company has also suspended dosing in all clinical trials of the
drug. The drug, which was approved last November, was widely expected to become
the world's leading multiple sclerosis treatment.