questions and/or concerns

[tracy]

Hi, I am 33 years old and was just released from the hospital.
I was told that I have ms. I have been getting so much info
on this illness that it has over comes me.  I just went through
the treatments with the iv to bring down the swelling.  I am
an extremely active lady and to just stop like this is a big
problem for me.  I am to go back to the doctor on the 21st of November to gain more information about some shots that I am
suppose to give myself on a daily basis.  I just want to understand how this can happen when I take care of myself, eat
right, excercise and etc...I want to know what could have brought
this on and why did it take so long to find out that I even have
it.  What is the worst case and the best case.  I guess there is
no way to get rid of it but maybe something to easily handle it.
I love the sun, boating, hot tubbing and so on and I was told that I would not be able to do those things anymore.  Does this
mean at 33 when I have everything going for me I have to turn
into some old lady that never leaves the house?  I know that I
will probably get most of my questions answered from my doctor
on the 21st but I have to tell you these questions are eating me
alive.  Any insight that you can give me would be greatly
apprecicated.

Tracy

[SAL]

Hi Tracy,

It's a bummer to find out you have MS. Though it will change your life, you will find that you
are still very much able to have a life.

I  was diagnosed 5 years ago and without the internet (as I had no computer at the time) I took
out every library book I could find.

Often, the unpredictability is worse than the disease itself, but knowledge will help you cope.
Someone already suggested the MGH website, a good forum for individuals with MS. To find
out more about the what's and why's of MS, checck out the followinng websites:

http://www.nmss.org   and   http://www.ifmss.orf.uk

The first is the National Multiple Sclerosis Society's website, the second belongs to the Intern'l
Federation of Multiple Sclerosis Societies. Both have a lot of information.

Best wishes, Sally

[rk]

Hi Tracy,  You will appreciate this website:
http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=Multiple+Sclerosis&number=59&DaysPrune=20&LastLogin=

It is Mass. Generals MS web forum.  There you can chat and share with people who have MS.  I am sure they can help you through all that you are dealing with.  My Uncle has MS (since his 30's) and has lead a positive ambulatory life.  He is 65 and still walks.  MS has many courses and the probabilities lean to the less severe conditions.  Good luck and god bless.

[tracy]

Thanks for all of the wonderful replies that I have received from
my post.  Carol thanks for your opinion as well.  No I do not
use substitute sugars so that is not part of the problem.  Kt,
and everyone else, as far as I know is the following:  Several
weeks ago I started experiencing numbness is my lower legs and
arms.  Almost like they were asleep but without the tingling.  
At times I felt like I was a little tipsy but I havent been drinking.  At the time I just blew it off to working two jobs
and that I may just be exhausted working during the day 9 hours
and then in the evening 9 hours waitressing part time.  For a
total of about 120 hours a week.  I went to my daughters basket
ball game and blacked out walking up the bleachers.  I felt like
I couldnt get my legs to work correctly and the room span around
me.  I passed out and was taken to the hospital.  They admitted
me after running a few tests, not telling me what was going on.
They did those silly tests, like the ones you get when you are
pulled over for drinking and driving.  I failed all of them.  
I couldnt touch my nose, couldnt walk, everytime I closed my
eyes and held out my hands I fainted and couldnt feel the doctor
poking me with a pin in my arms and legs.  I also had double
vision really really bad. The doctor then ran c scan and MRI
the MRI showed white spots around my brain, which indicated to
him that I had swelling.  He ran blood tests after blood tests
and then a spinal tap.  He did a wet reading on the spinal tap
and it was positive for MS.  He let me go home from the hospital
and I had a nurse come by every day for my IV.  (nasty stuff).
He called me last night and said that yes it is MS but it is also
something else.  That the test showed from the spinal tap.  I am
not sure what and I wont find out till Nov 21.  Now, my vision
if better, still cant touch my nose with my eyes closed (silly test) my arms and legs are still the same.  I am not sure what
happens from here. It is very hard to answer questions about an
illness when I do not even know how extreme it is.  I have been
told so many different things.  What to expect and not to expect
what could or could not happen, its just better that I wait till
the 21st.  I do know this.  If I had any idea then what I know
now I would not have just put it off on being exhausted and would
have had it checked.  I am not sure if I answered all of your
questions.  I hope so.  My email address is ***@****
if you would care to write more.

[Sarah-Thank You!]

I am so sick of that aspartame spamming. Cut it out!

[question for Tracy]

Hi Carol,  I read your post.  I bet there might be some truth to aspertame, along with the water we drink in our cities that is full of chlorine, the hairspray we use and breath in, the pesticides in our foods, the hormones and steroids in our livestock, the hole in the Ozone etc.  

Where am I going with this?  None of the above have anything to do with the fantastic Doctor who replies to each and every question on this board, who takes his/Her time to think out each question, use his expertise to comfort the other person on the other end who is terrified of having something neurological.  He gives advice which most Drs avoid doing becasue of the risk involved.  Might I suggest you contact the companies who manufacure Aspertame?  Or possible create your own web site with your gathered and doccumented legit information on this well tested ingredientinstead of reaching out and slapping this Doctor in the face who has absolutely no ties with Aspertame or the companies.  Thank you.

Just about every chemical and ingredient on this planet may be toxic to one and not to another.  There are far to many environmental factors that cause many disorders.  Maybe a Genetic specialist or envirommentalist would be a better board to follow with postings.  Carol I respect your concern to Aspertame, and I am concerned about all the additives, preservaties, hormones, steroids, our air quality etc.

P.S. Tracy, I would like to know more about your MS and how it was diagnosed as the other gal asked.  Thanks much and Dear Doctor, you are an ANGEL!!!  God Bless you.

[Amy]

This woman(Carol)seems to spam all of these questions, or simular ones, and maybe she hits one in a million that have a reaction to aspartame.  This poor woman(Tracy)was just diagnosed with MS and doesn't need it.  GOOD LUCK and GOD BLESS you Tracy and I will pray for you.

[Craig]

Dear Carol, the doctors here are far from "clueless" They provide a valuable service to those of us who have no other alternative or are worried about friends and loved ones. I have seen your aspartame posts both here and on the MGH site. Please do us all a favor and quit spamming these groups with your scientifically unsubstantiated claims and stop insulting these wonderful people who give so freely of their time and expertise.

[question for Tracy]

Hi Tracy,

What were your symptoms and how as MS diagnosed for you?  Very curious as I have some odd things going on.  Please feel free to go into detail with your symptoms and diagnosis because it may help me greatly.

Thank you

KT

[CCF Neuro[P] MD, RPS]

Dear Tracy:

Sorry that you have the disease of MS.  Actually, we are uncertain of what causes MS and why a particular person comes down with the disease.  There are genetic predispositions and environmental clues to why someone contracts MS, but no clear answers.  There are certain genes, what we call HLA genes that people with MS cluster with, but people without MS have the same HLA genes so a clear genetic relationship with MS is not conclusive.  People who are caucasion seem to get MS more frequently than people of color, but African americans get MS also.  People who are born in the northern hemisphere, especially above a certain latitude seem to have a greater chance of coming down with MS than those born at latitudes below a certain degree.  So, bottom line although there are hints that MS has a genetic linkage and environment element, there are no conclusive answer.  

We think that this may be a viral disease but so far no virus has been found linked to MS.  What we do know is that the lesions in the brain are caused by the immune system attacking both the myelin and nerve processes.  What triggers this is thought to be a viral illness that triggers the immune system to attack itself, and once this process starts it seems to be progressive in most cases.  The medication we use are immune suppressors, trying to stop the immune system from attacking the brain.

We are uncertain why this process occurs in distinct waves (most of the time) of waxing and waning symptoms.  Hence the name multiple in multiple sclerosis.  In some people this process is very, very slow, and some it is very rapid and continuous.  Why this happens is currently unknown.  We do know that taking medications and rehab after events slows down the disease and limits the disability associated with the disease.  

I hope that I have answered some of your questions.  I would recommend that you go onto the MS societies website and gather more information.  I do hope your disease is very mild.

Sincerely,

CCF Neuro MD