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
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
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 donıt 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 youıre 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 didnıt want to do, or wasnıt 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 :)
Hi all,
I was DX with MS in 2002. In the beginning I was hit pretty hard. My vision
was gone, had Trigeminal Neuralgia on the right side of my face, balance issues,
weak bladder, severe fatigue and severe depression. Within a couple of weeks I
got my vision back and the TN went away as well. My other symptoms progressed.
The first neuroligist I went to put me on Avonex. I became suicidal and tried
to kill myself. I was put into a psych ward and that is were I met my
psychiatrist. In reading my records he found out thet I had MS. He new of a
neuroligist that specialized in MS. An appointment was made for me for when I
was released from the ward. He felt that Copaxone was my best choice for my
symptoms. Since then I have been in remission. My depression is kept under
control with the use of meds and accupuncture. As of today I am doing quite
well. I am however unable to work due to the fatigue issues. I do take
Provigil (200 mg twice a day) but that is not enough to curb my fatigue
completely. I do miss teaching Biology, Physics, and Computer programming so I
took up writing web pages using HTML. I am also in the process of writing a
book on "How to Train Your Puppy from Ten Weeks On". If I keep myself pretty
busy so I don't think about me too much with my problems. To help me through
all of I have a wonderful who has been extremely supportive. I thank God for
bringing him into my life. I take each day one day at time and am thankful to
God for each wonderful day. Thank you listening. :-)
Sunshiner61 - I am so sorry to hear about your relapse...I know it's
got to be scary. I know that I could wake up with new symptoms or a
relapse with no warning at any time...and it's always in the back of my
mind.
Jayne - I love your attitude! I, too, was actually relieved at the dx
of RR-MS...I know, a little strange. I just thought I was falling
apart physically & mentally & emotionally, it was nice to know there
was a reason behind it. I'm still learning things to avoid so that
I'll feel better...my latest discovery is carbinated beverages of any
kind, so no more sodas.
God bless everyone - you're (we're) in my prayers every day.
Toni
Hello,
I noticed Laura's message. This is the place for the questions you have! I have
been diagnosed and have lived with M.S. for almost 10 years now. Please let us
know here how we could help you!
Regards,
Olga
Hi,
I'm sorry to read about your DX :(
Eight years ago, I remember when my neurologist put the films from my
MRI on the light-box and I looked at them and said, with a huge grin,
'Great! It's only MS!'
He'd forgotten that I used to market brain scanners and, hence, knew
what plaques looked like; he said that mine was not the usual
response to a positive DX of MS!
I explained that I thought I had a brain tumour as I had lost two
friend to that so the DX was a relief.
Coincidentally, I met with my neurologist this morning and he
confirmed, as usual, that there were still no medications that he
knew of that would help me... SNAFU, then!
It would appear that, although my DX was RR-MS, the annoying symptoms
are gradually getting worse but, as Charlene said, a healthy diet
seems to be helping me a lot; I'm non-smoking, vegetarian and only
drink about three units a week anyway and eat mostly organic food -
Gosh, that sounds so dull!
My three daughters have moved away and my life-prop now is my partner
and he keeps my spirits up wonderfully, which is appropriate for next
Thursday :)
I love cooking and my kitchen is arranged like an OCD sufferers
paradise! This saves me cutting myself *too* much when I cook
although the iron still seems to have it in for me! :( I leave the
dishes for him, which he loves and, No!, you can't have him!
Life *does* still go on, it's just a bit different! I like new
challenges and MS certainly gives me them!
Love and hugs
Jayne x
I'm so sorry to hear you have MS. It's such a shock, all your
preconceived ideas about MS come up although these days with the new
medications it's not the same as it used to be. All of the drugs
including Copaxone are used to prevent or slow down progression of
the disease. They don't reverse it. I'm on Copaxone after trying
some of the others and find it best for me as there are no side
effects except the local reaction from the injection.
Studies show they all work about the same but each individual needs
to find the one that works best for them.
No one knows the cause of MS although there are many theories. If
you're like me you'll want to do a lot of reading about it and there
are lots of recourses to do this. When I was first diagnosed the MS
Society was wonderful. They have a "newly diagnosed" packet they can
send you and there are people there to talk to as well. Give them a
call.
There are lots of us with similar experiences here to support you.
I'm glad you are reaching out. Please continue to ask questions as
they come up.
Kai
>
It has been awhile ...since I have been here!
This has been a really rough couple of months. Have been trying to be really
tough. Here are details.
On Dec. 18, a new episode, technically called a, "relapse", of MS, hit me. My
vision, balance and changes of tasting and a few other new symptoms seem to have
blossomed. Went through a Solumedrol (cortisone), "burst", for 5 days. then
prednizone taper. It was
done at home.
The day after Christmas I started having terrible pains and the muscles were
ceising down the backs of my legs. Couldn't get ahold of the neuro until
Thursday, but found out that I needed another medication to help with this new,
to me, symptom and that it is now possibly a constant problem to deal with,
unless neuro physical therapy will help? My vision and balance were hit hard
too. Seem to be in a, "brain fog", most of the time. Anyway, it has not been
pleasant but I seem to be getting some better. Everything combined seem to have
done a job to my personality, as well. Hopefully this will clear as I get
further away from the, "burst" of Solumedrol.
Had been taking Betaseron for 3 years.
New MRI showed new lesion activity.
In January my neurologist and I decided to change to Copaxone.
Well, I did fine the first 2 days of it. the third day, I had a horrible rash
that night. We had been told of a couple of possible bad reactions but not about
the rash possibility. Didn't know what the horrible rash was from the first
night, so took another shot the next day and that night the rash was even worse.
Called my Dr and Copaxone to report the rash and read the rest of the possible
reactions in the book that I had gotten with the medication.
The rash was from the Copaxone.
Went through a withdrawal from the therapies.
Was next referred to an MS specialist, across town (45 min.) and saw her for the
first time today. She is in charge of dispensing Tysabri infusions. The MRI
showed 20 new lesions and one is large and around the brain stem.
It has been very upsetting but I don't seem as depressed as when I was doing the
Betaseron shots.
So, I am interested in others who have gotten the Tysabri infusions.
Hi,
My name is Charlene. I've lived with MS for 13 years. I'm sorry I
won't be of any help with Copaxone. I don't take any drugs. I treat
my MS with vitamins, oils and a healthy diet. I have
relapse/remitting MS and it has been very manageable for me. I also
have a brother and my mother that have MS, along with a couple
uncles. It runs rampant in my family. I believe there is a genetic
connection but not as influential as an environmental influence on
this disease. I strongly believe in doing as much as I can through
natural means, and not only because I don't have insurance. If you
would like to know more about what I do, send me an email.
I remember what it was like to get my diagnosis. My mom had been
diagnosed with it a month before me. My brother was diagnosed a
couple months after me. I was lucky to have a support system: a mom
and brother who understood. We weren't particularly close, but it
was a comfort to know someone understood. I was sad for a while,
realizing that there were limitations to what I could do physically.
But I also had a distraction... I was getting married. It helped to
get my mind off it and focus on something else. It took me a while
to settle into the disease and learn my limitations. You will learn
your limitations too, but that doesn't mean your life is over. I
have a wonderful husband who helps whenever I have problems, and 5
beautiful children. (I ignored the doctor who told me to have 1
maybe 2 kids and I'm glad I didn't listen.) My life didn't stop with
the diagnosis, it just took a different road. Everyone copes
differently with bad news. Take some time to mourn, but don't dwell
on it. Find the positive. Even now when I have the occasional
exacerbation, I take time to cry and mourn the loss of my physical
strength, then I get up and make dinner for my family. Life goes
on. Don't stop because you can't feel your hands or feet. That
doesn't matter, it's who you are inside that counts.
I hope this helps a little. It's going to take time to find your
groove, but you will learn how to live with it. I don't know how bad
your case is, but I truly wish the best for you. Good luck.
I was Dx oct 06 but it was suspected in 1989. I LOVE Copaxone!!!
There is relatively no or few side effects!! All the interferons you
feel like a super bad case of flu 2-3 days every week. Insane!
Copaxone is daily shots but they send out a nurse and it is easy!
Pretty soon it is part of your daily routine! It makes you think you
have some control over MS and take the power and do the shot every
day. It does not change the fatigue, just not as bad as when you forget the
shot. What it does is the amino acid in copaxone mimics the cells that your body
is attacking and attacks the copaxone instead. They put on alot of seminars.
Contact Shared Solutions and they will let you know when there is one in your
area. Also ask for travel boxes. They will send you some for traveling and I
keep my shots in them in the fridge. They also have hot/cold packs you use for
shots. Also google MSAA! They have super programs. They have free loaner books
you can request, then you send back the books in the bag postage already paid.
They also have a cooling vest for summertime you can request. Filling out a
form. MSAA and shared solutions are my top 2 resources. Shared solutions is
open 24/7/365. After 8pm they have on call nurses and they will
call you right back. any concerns or questions. Don't hesitate to get
counseling if you find you are depressed. I personally highly recommend everyone
read MS and your FEELINGS!!! I did not find it until recently! Allison Shadday
is LCSW medical clinical social worker and was diagnosed with MS. VERY Very
helpful book!! Check it out at your library if you cannot afford the 14.95 or
amazon or whatever discount. Biggest thing is dont make any major decisions for
a year. Take a leave if you must but give yourself a chance to grieve. What I
have found is that the griveing is ongoing. Just when you accept the DX then
you have new symptoms that start that grieving over. That is normal. Just allow
yourself to feel and accept it and be thankful for what you can do. NOt what
you have lost thru attrition. It is a disease that slowly takes away things and
over time you say huh, i cannot do that anymore.
find a good dr you like and respect. Not uncommon to fire a couple
neuros til you find a good one. Hope this helps you. Also a good support site
like Daily Strength has discussions and great friends. The best site I LOVE is
PatientsLikeMe!!! It is wonderful. The owners are super! On PatientsLikeMe, you
enter your symptoms and can keep track of them and there is a link you print out
a drs report sheet to take with you to show the ups and downs of your symptoms!
that is very very important. Also you can blog or keep your own private
journal.
hugzzzzzzzzzzz
mswithms
Hi ,
Iım new to this group, but old to MS I was diagnosed exactly 10 years ago this
month, but think I had it much longer than that. I donıt think there is anything
any of us can do to avoid getting MS, except maybe be born in a tropical zone.
Itıs not your fault you have MS. You didnıt do anything wrong. It is a shocking
diagnosis, but itıs not as scary having MS as it seems at first. Personally
and this isnıt for everyone I found that going to therapy helped me deal with
it.
My understanding of Copaxone is that itıs a sort-of decoy drug instead of your
immune system attacking healthy cells, it attacks the Copaxone instead. This is
a very generalized understanding. Your neuroıs office might have an ³MS nurse²
on staff who can explain it in more detail.
Hang in there.
Josie
Hi I am Laura and I have just been dx'd with MS about a week ago.
Hoping someone can please help me understand how Copaxone will help and your
take on what might have contributed to my getting MS plus how to just work
through the pain & shock of being dx'd.
Thanks