Thanks for accepting me into your fold.   I Am thankful to find a group again,
to share in this confusing health problem that I seem to have. The reason why I
am joining this group is to have a link to and from others who also understand
MS. I will, hopefully be as active and helpful as I can be. I had been with a
group that I can no longer find. It was, "live" and we could share back and
forth. However, often it got, "carried away".

My MS problems began in 1969. First possible dx was in 1973. Slowly, I finally
got better. That early, "possible MS", dx came after having a spinal tap. There
were a couple of times that I can look back and realize that I had little
disturbances from it, through the years.  3 years ago, it started again with
balance problems. I went to the Dr and then for many new tests, that weren't
available the first time. Because of my experience with a spinal tap, I decided
not to suffer through another one in 2004. The hospital where I had the first
spinal, no longer had the records of the first one.   This round, I continued to
get more symptoms. Before they finally started medication, optical neuritis took
its toll on my left eye. Some days my vision is so that I am unable to
participate in anything. In late 2004, I took a, "round" of intravenous
steroids. That did nothing to help me. Then I started Betaseron, which was a
choice I was given. I had a difficult time deciding whether to take it or
Avonex.  Depression has plagued me and still does but the medications for it
have not helped me so I have chosen not to take them.  Have found that
exercising only aggravates my symptoms. A strong faith, family support and
hobbies help me stay focused and willing to live. We thought, hoped and prayed
that I had been healed. Well, I was healed for a nice long time.

My life, in Colorado is good. I have a very supportive husband and 3 grown
children, plus 5 grands. I am mostly retired and had a major MS setback starting
3 years ago. One of my hobbies is collecting machine made marbles. That helps to
keep my mind sharper and some days seem to help with depression. I was an artist
until the optic neuritis caused too many problems to do my artwork any more.
Now, I make crocheted and loomed items for the needy and for Project Linus.

I have been a member of this group for awhile but have never really
posted anything.  I have had MS for a year and a half, it will be 2
years in April.  When I was first diagnosed I tried starting up a self
help group through the MS Society but no one showed up for the first
meeting, now I am trying again.  I was just wondering if anyone had
any suggestions on how to get people to show up. I know when I was
first diagnosed I didn't want anyone to know and it seemed like a
death sentence, but I have realized that I still do have control of my
life and MS isn't going to control it or I am not going to let it even
though it does to some point, anyway. I wanted to start this self help
group so that I can talk with others in my area to see how they handle
different things, and family members that just don't seem to
understand, and all the other good stuff that goes along with MS.  If
anyone has any suggestions, my ears are open or I should say my eyes

(lol).
Thanks in advance
Denise

When We Say We Can't Do Something Because We Don't Feel Well
Put Yourself In Our Shoes By Using The Chart Below

Good Morning.  I was diagnosed in 1989 (at age 40+) and constantly
search for other MSers who have been diagnosed to share our
experiences.  This group is a great source.  I remained mobile for 15
years, now am confined to a wheel chair, but realize I am not alone and
continue to relish each good day. There others far worse than myself - I pray
for each and every one of us each day.

Happy Holidays
Loni

I was diagnosed with MS about a year and a half ago and was suffering
with awful and mysterious symptoms for a while before the diagnosis.
At the time of diagnosis I just thought I needed glasses:). My eyes
increasingly got worse to the point where I became severely
inoperable (nausea, dizziness, double vision). It was scary and it
was then I knew it wasn't about glasses. I then found out it was
Optic Neuritis.

Since then I have had a series of ups and downs. Numbness, tingling,
depression about what was happening to me and why... it was crazy. I
have chosen to treat my symptoms by changing my diet and via the use
of vitamins and herbal supplements but the most important supplement
to my life is PRAYER! My symptoms have improved dramatically.
Struggles are there, but I can tolerate them.

God has brought me through, the only challenge for me it to not allow
stressors (i.e. LIFE: I'm a recent college graduate so finding a
supportive work environment that can understand MS has been tough and
the stressors in the form of uncaring/mean people have caused a
problem). I have to fight to not let these things bring my spirits
down. I am finding that stress and worry seems to be a huge onset on
my attacks.

I look forward to meeting people who are SURVIVING! I feel a little
socially isolated. The first and last neurologist I had basically
issued a death sentence to me. He had a very pessimistic attitude and
awful beside manner!!! My future according to him... one that was
hopeless and would have me confined to a wheelchair by the age of 35
(I'm now 26). I am not accepting that. I believe God is the only
author of our circumstances…I am hopeful:). It is nice to meet
everyone!!:)

Thanks for your care about who needs support with MS!

- I joined the group in the beginning because I thought I was the only human who
was passing through this trial  ... then by being here I discovered I am not
alone and in fact I may be one of the lucky ones!

  - I need comment on this subject: what about those unable financially to treat
their MS? How do they manage their medical care and medicines? For me, I rely on
controling my diet and depending on herbal food supplements. For worse cases
senerios I take Soulmedrol - nothing more! I trust in my God's mercy in all
cases but I am sure many of us need to know what sort of support is out there
for those of us who may be financailly unable to pay for medicine & care should
be become worse in the years ahead.

  - In all this group gives me good informations and I feel your support ...
thanks!

Dear L.I.V.E. with MSers...

I've been having severe episodes of vertigo with terrible nausea and vomiting
such that I cannot function.  Until recently, these episodes have happened only
about once a year, but this year it's been one from August-September and another
one just started.  My neuro treats it with 3 to five doses of IV SoluMedrol. 
It's the only thing that will bring me out of the vertigo.  Now he's suggesting
Novantrone.  I'm wondering if anyone has had a similar experience and if anyone
has tried Novantrone.  If so what were the results?  I'm a bit worried because
we have a baby in the house and of course that means frequent colds, etc and I
think that Novantrone diminishes the ability to fight infectious disease.

Kai

Hello dear MS friends,

My MS was diagnosed 8 months ago following a flareup of optic neuritis that I
have yet to recover from even after I used IV steriods for 5 days. I started
Betaseron about 6 months ago but for the past 4 months now sometimes I sense
tingling for little time. Could that mean the Betaseron is not effective for me
and my MS is still progressing?

Hi,
I think everyone is misdiagnosed at first with M.S. I was just diagnosed June 05
but I know I have had it for at least 5 years maybe longer,  my speech is still
slurred at times and I also had the tingling in my left foot and left hand I am
on Copaxon take a shot every day so the tingling is still there but just
sometimes, the thing is no 2 people have M.S. the same weird illness.

Take care - Sincerely,
Kim

Your dx dilemma is familiar to many MSers.  We go from tripping and
falling - to tingling - to Optic neuritis- to regular Dr. - to
specialist - to Neuro - to MRI - on and on and on.  We are relieved to
find out that it was not "all in our head" - that there was something
wrong - and there are more avenues to treat the disease. Probably most
important that there is more awareness and understanding.  Have as good
a day as you can. Loni

Get second opinion and get on one of the ABC drugs or Rebif asap.


...with god all things are possible

Ak your doctor to prescribe Lyrica.  I've tried everything and
nothing works like it for the pain and the stinging.  I don't
understand  why your doctor doesn't think you have MS when it sounds
like you do.  I also had migraines for years before my MS was
diagnosed, though I have never seen anything in an MS book that says
they are related, I know of many others with MS who started with
migraines.  Since I went on Betaseron 1.5 years ago and now switched
to Copaxone, I have only had 3 migraines and I used to have them
monthly.

Good luck to you!
Read all you can on the subject.
Dot

Hi

I went through a long process also. First a family  doctor sent me to an
Orthopedic doctor for hip problems. After intense therapy  and a lot of working
out at the gym, I was in great shape, but I was still  tripping, falling, and
had weakness in my left arm. I also had the tingling in my left leg. A new
family doctor failed me after trying to do some simple  things. Had a MRI of my
head, and lesions were found. Went to a Neuro and had  more tests. Still
probable. Then I had Optic Neuritis, and then they  diagnosed me! When I
went to the specialist for my eye, he told me I had this  before in my other
eye. That was 2/98, my dx was 3/2001. So, this took some  time. There is no
definitive test for MS, everything else needs to be ruled out.  To me, this is
precious time that the patient could be started on treatment. I  lost a
considerable amount of mobility after my relapse in 3/2001. In hind  sight, I
can go back to 1981 and I had some incidents where my left arm would  just drop
when I would reach for something. I had a doctor look at me and do  blood work.
I think he thought I was a flaky 20 year old. Keep pressing your  doctor for
answers. You are your best advocate. I here the Cleveland Clinic is a  great
place, sure they will help you there.

Sherry

My name is Carrie. I have had symptoms of MS for two years now. I
first started seeing my Neuro in 2004 for bad migranes. The migranes
were so bad it would cause my face to be numb for days after the
migrane subsided.My arms would feel weak, and picking up things would
be difficult. My Neuro put me on Topomax and the medicine did very
well for the migranes....BUT after a year had passed I then had other
symptoms. I started getting tingling in my hands and feet, kind of
like ants were crawling all over me. The numbness started comming
back in my face.And my legs were going to sleep.I knew I had to
pressure my Neuro to do another MRI of my brain , when I was standing
in my kitchen one day and a sharp pain went in my back like someone
was stabbing me , and then I stumbled over. My Neuro then did the MRI
of my brain and sure anough there were MS lessions. He then said he
wanted to do one of my neck and spine,and those only contained small
lessions,hardlyanything there.We then did a lumbar puncture. When
those results cam e backhe said it wasnt normal could be MS or viral
I thought this is soooo discouring, ethier it is MS or it isnt. He
now has me on Neurontin, and I still am taking topomax.These meds are
not helping,I still stumble,my speech is slurred at times like im
drunk, and the tingling is drivign me crazy.He is sending me to
Cleveland Clinic next month.Does anyone out there have any of these
symptoms, or has had a difficult diagnosis????

I had the same thing 3 years ago, couldn't walk and was told if I stood up
straight I would be able to walk, that his MS patients
didn't walk like me.  Then he tested my strength and reported it was
weak but he could convince me otherwise.  Asked me if I was working
and coping, and when I replied "yes" his response was "so what's your problem?"

Next visit to the University Hospital, the on-call doc phoned him and the neuro
told me to see a psychiatrist that I had a problem so deep in my brain that I
didn't even know I had it.  Couldn't get anything from the doctor at the
hospital.  First neuro, (the other was my second), looked at my MRI and said
there was no MS and I asked him why I had problems walking, and he said he
didn't know (and basicially didn't care) and that he is telling me I didn't have
MS and coming from him (the top MS Specialist in my province) that that was good
news and go home and live my life.  Finally found a 3rd neurologist that is
wonderful, believed me and said to call him if anything comes up (at the visit
nothing showed) so I did call him when I lost use of my left arm and he then
booked another MRI (2 yrs
from first one) and he told me that if you wait 2 years from the 1st
MRI (the one that showed negative lesions) and then something shows,
well you have MS, if nothing shows, your chance of MS is almost not
there, there would be another issue.  Well 2nd MRI showed 7 lesions.

Took me 2 years and a lot of mental stress, other docs even
chiropractor told me I had MS but the other 2 neuros are QUACKS and
there are alot of them out there. Hang on and believe what your body tells you. 
My symptoms came and went pretty fast and pretty frequent but some stayed for
awahile. Even when they saw I had symptoms they still didn't believe me. You are
not alone out there.  Alot of MS chat people have been through it, you are not
CRAZY, keep going to neurologists until you find one that believes in you and
you are comfortable.  The average number of nuros is 3 before a MS patient finds
one that suits them.  Good luck and again, believe in yourself, they don't have
the disease or the symptoms, they don't always know.

Maxine

I'll second that!

Hello dear, I have been on Betaseron for 6 months now and recently in a blood
test my anti-DNA was positive. My neuro doc said that it is side
effect of Betaseron. Has anybody else experienced that an dif so what have been
the long term effects?

Sounds like your current  neurologist  hasn't been very thorough.  Maybe you
will feel better after seeing one who specializes in MS. The Neuroscience
Department at Albany Medical Center in New York have a wonderful staff that
understands the frustrations MSer's go through.  I recommend that you seek an
appointment to see a specialist there.  I think they will help you  without
blaming your symptoms as delusions.

Good Luck - Have an okay kind of day.
Loni

I don't agree with your neurologist about "to be diagnosed, lesions
have to appear over time and space." I have had PPMS for eighteen
years, my MRIs have never changed since the first MRI (each subsequent
MRI with and without gadolinium). I have never had an exacerbation
that is why my MS is classified as PPMS. I just saw my neurologist
last Thursday. (He's director of the Maxine Messinger MS Clinic in
Houston). I asked him again how he would  classify my MS. And, once
more the diagnosis was PPMS.

I have certainly become more disabled over the years, but that has to
do with the nerve endings (axions) dying under the lesions.

MS certainly is incredibly frustrating even for the doctors.

Your message and the various replies was a gift just when I needed
it.  I too have been told for the last 2 years that my symptoms were
a conversion disorder although a neuropsyche eval said there was no
problem.  My symptoms, fatigue,muscle spasm pain, spasticity, tremors
and tics have been getting rapidly worse over the last few months.
It seems like it gets a little worse each summer.  My last MRI was 9
months ago and showed some suspicion of demylination but not enough
to be diagnostic.  My spinal showed slightly elevated protein but no
oligonal bands.  The last 2 neurologists wrote it off as a
psychiatric problem but given the situation, timing and my history
that just didn't make sense.  I have been suffering with so much self-
doubt and concern about my sanity lately that I can hardly get a good
night's sleep.  I am almost positive that I have MS given the
progression of symptoms, along with remissions over the last 30+
years.  The spasticity is now so bad that I can't walk for more than
5 minutes without the use of a cane and even that is painful and
exhausting.

I am now trying to see an MS specialist is my area.  He has asked for
the reports from the previous MRI's and may request a new one before
he sees me.  I just keep trying but it is so frustrating to know that
something is wrong and you can't get the needed treatment to limit
the progression of the disease.  Thanks for your encouragement.

I have had optic neuritis and treated it with steroids.  Although in
the first few months I had a little vision come back.  I am legally
blind in my one eye now.  My Neurologist said usually 6 months, but
there are cases that people have gotten there visions back after that. I think
it is just different for everyone.

When I went to my MS specialist she told me in order for MS to be
diagnosed lesions have to appear over time and space.  Which
basically means that you have to have more then one MS episode and
your MRI has to show different lesions. Some places are more lax on these
standards though when they are pretty sure of a case because they want to get
their patient on a medicine as soon as possible.

Good Luck to you.  I know how truly frustrating it can be.

I was told the same thing as Glory, go see a psychiatrist. I was told I had some
deep problem way back in my brain that I didn't even know was there and only a
psychiatrist could help me.  Well 1 year later another
neurologist (3rd one) and another MRI and I had 7 lesions, it was MS.
Hang in there, only you know whats going on with your body, some
neurologists/specialists are all about science and if its not there in
front of them they say we are crazy, like we have nothing better to
do than go see doctors.

I just wanted to share that there are a lot of us MS'rs that have
been told we are crazy in one way or another but have come through
and found the right doc.  Don't give up and find one that you feel
comfortable with.

Take care and my prayers are with you.

Hi
Love your name Glory! t sounds like you've been through the
run-a-round. I think that happens with a lot of us. Really no definitive test,
so they keep you in the dark along with them. I was dx'd in 3/2001, with optic
neuritis. Turns out I had, had it before. Back to 2/98, right before my 
wedding. I had an incident back in 1981, got checked out for a bunch of  things,
and they found nothing. I can look back in hind sight and figure that's  when
things started to happen. I know once I had a diagnosis, I felt like I  wasn't
crazy. Then I actually had to deal with it. That's another story. Grace  covers
it all.

Hi :

3 years ago I was in the same situation as Rebecca.  I had all types of MS
Symptoms, walking problems, lost use of one hand, numbness on
complete one side of my body, legs shaking and 2 MS specialists said
nothing was wrong, one told me to see a psychiatrist that I had some
head problems.  I too at that time had had an MRI and nothing showed
(there is a 5% chance that nothing will show on an MRI as lesions
have to be larger than 2 mm).  I finally found a neuro that listened
to me and believed in me.  He sent me for evoked potentials and a
spinal tap and as you, nothing showed up.  He continued to see me and
saw me have an attack which did help him to believe.  He did set me
up for another MRI but he said it would have to be 2 years after the
first one.  If nothing showed up on the MRI again, after 2 years, it
would not be MS but possibly something else.  Well the lesions showed
up, all 7 of them, largest being over 1/4 inch in diameter.  I
understand it can be stressful but tell your neuro about what my neuro
said (he specializes in MS also) and possibly he will send you again
in 1 year.  It takes time for some of us and others, one little
symptom and it shows up.  Again like the neuro told me, it doesnt
matter how may lesions you have or how large they are.  You can have
2 lesions and be in a wheelchair or you could have 10 lesions and
little disability to none.  Take care and hang in there.  You did not
mention your symptoms that are like MS so can't tell if I or
anybothers have experienced them, and everyone is so different in
symptoms of their MS.

Hi, I am glory, I am new to the group.  Was interested in finding a
group and came upon this group today.  Was glad to hear that you
pray for each other, as I am a Pastor's wife, that is a real added
bonus, the prayer.  I have had neurological problems for about 16
years, ms was looked at during that time, some said possible ms,
some said it was all in my head, they just shook their heads at me.
Then this last year and half, we moved for my husbands job.  I
started with a new doctor for general care, and she decided to send
me to a very well known hospital to a neurologist to find out what
was going on.  He told me that he would do the tests but they would
all come back normal, because I had a somatic/conversion disorder.
I was so upset, I came back to my doctor and said send me for a
psych evaulation, she did, which came back no conversion disorder.
The psych doctor, then sent me to another psych doctor who
specializes in chronic illness, and she is wonderful.  My regular
doctor then sent me for a brain mri, which came back with disease in
the white matter, which could be vascular, but could not rule out
ms.  I then asked to go back to a doctor who I went to in 95, who
said I had demylenation taking place.  I went back to the ms clinic
there, they did a lower brain stem and spine mri, and diagnosed me
with secondary progressive ms, but still thinks there is some
relapsing going on.  I just started on betaseron.  Sorry this is so
long.  I knew I wasn't crazy all this time.

In Christ's Love,
Glory

Hello everyone,

I am new to the group. I just found you while doing a search about MS
like symptoms.

I just wondered if anyone was told they had MS just from an MRI
showing lesions. I also have symptoms that they say are MS like. I had
2 MRIs a year apart and there was no change in the 2nd. I have also
had Visual evoked potential (VEP), Somatosensory testing upper and
lower limbs, Spinal Tap and none of those seemed to suggest MS.

I don't want to start taking meds for MS unless I can feel confident
that it is MS.

Thanks
Rebecca R.

Hi Nimaoy,

Sorry to hear about your visual problems. I have all kinds of them for over 26
years. One of the longest periods of time was several months with nystagmus. I
think I may have had a longer period of time when my eyes were not in "sync"
with each other and they put prisms in my glasses, which corrected it. Then, it
went away. I have had periods, where I couldn't read and listened to books on
tape.
Thankfully, my vision is now normal except for being near sighted and
some slight problem telling certain subtle differences in color. When, it is
real hot, I avoid going outdoors because that can set off
problems. When I do have minor problems, I try to rest and not do too
much reading or computer work. Sometimes, they have treated me with IV Solu -
Medrol and sometimes not. I did have steroids eye drops once, which made me feel
self destructive.

I just read that the longest period of time you can have an MS symptom for with
no possibility of recover is 2 years, but I've heard of longer than that. I
believe Eric Small, the MS yoga guru, was in a w/c for about 15 years. He's in
his 70s and I saw him stand on his head a few years ago.

My own Mother, who has MS, was unable to walk, when she was first
diagnosed. Even though the docs said she would never walk. She walked
after 6 months, has used a cane for over 20 years and needs a scooter
sometimes for long treks in recent years. She's 83.

Since my legs have started acting up, my eyes have been fairly stable.
I, too, would like to know which drug is best for possibly stopping
the progression of visual problems specifically.

I see a wonderful neuro opthamologist with a special expertise in MS.
MS is just such a mystery.

Good luck, Maggie

It is about 6 months for me now and my vision has still not recovered. I'm
wondering if I should change drugs. I want to know how Betaferon/Betaseron works
for you and how effective it has been in controlling your symptoms?

Hi Ashley,
Good for you for doing this project!  It's always good for all of us with MS
when others know more about it. In my case, I have Relapsing-Remitting MS, I
have very little disability bewteen replases which happen on average about once
a year.  I do have some weakness in my hands and numbness in one foot and hand
and deafness in one ear.  Probably the most troublesome symptom between
replapses is fatigue but I have learned to manage that with naps in the
afternoon. MS can take many different forms depending on what part of the
nervous system is attacked.  In my case it is the part of the brain that affects
hearing and balance so my symptoms during a relapse have been extreme vertigo
and hearing loss.  This is an unusual pattern but not unheard of.
Good luck with your research.

Hi Ashley -

MS does seem to effect everyone differently.  I have slight physical
problems - I do not have full vision out of the left eye, my left hand
goes numb and tingles on a regular basis, my back has a tendency to
hurt quite often when I've done nothing to cause it, and I get tired
easily...but nothing I can't get around.  I tend to have more problems
mentally/emotionally...I get frustrated easier than I used to, I tend
to be more short-tempered, I have a very short attention span, I get
overwhelmed easily, and we won't even mention all the things I
forget.  As I've only had MS a little over a year, and only been
diagnosed a few months - this is still new to me...but I started have
the symptoms about the time they think the MS started.  From what I've
read on this board, most people learn to adjust and just live their
lives.