Classic beinnning of MS in the first three years after DX - The terrible beginnings of MS - Personal - http://maxpages.com/happymspage/Classic_beginning_three

Crossing the line and starting down the hall to all the problems of MS .
After you are diagnosed as having MS,it has been said you probably will never be
treated like a human again.(Nancy Mairs)
None of us with MS stay the same as we were the day we were diagnosed.Some will
progress into severedisibility ar a fast rate,while other will move slowly into it
after many years.

You probably not being satisfied with the doctor told you will read much on
MS.Both in books and on the internet.Some of what you read on the internet is true.
Much is tied to emotions.The technical stuff cranked out by doctors you probably
will not understand.
The scientific approches to describing the disase can seldon plumb the depts of the
emotions you will face day to day with the unwanted guest now in your body.

Now imagine you decided to go to the local support group.You are new to the
disease.You soon see some of the long affected ones come litterly rolling in with their
wheelchairs.Your mind and what you have read tells you this probably will never be
yousitting as such some day.In percentages you are right.You have read about some getting
this bad but this is the first face to face meeting.The thought goes through your mind
that maybe you shouldn't have come.But now you feel you must weather it out.

You hear them talking about being on disability.How limiting it can be finanacilly
it is to them and the cut down in living style.You have a great job,as does your husband.
You also have very young children to raise.They go to the nursery daily as you go to work. They are preschool and are years from being able to care for themselves.

The longer term people affected by MS for years will tell you of the great overpawerin
fatigue which just turns your whole body in to a almost zomby.It will make it almost
impossible to put in a 8 hour day at work.Many of the peoplehere not in wheelchairs
have already found they can't work any more.This is even more scary to you once you hear them discussing this phase of their MS affected life.

Then the woman next to starts telling how she had to give up work,after just 2 years
of MS.She looks so great.She is young like you.She has three kids ,now that is all she
does is stay home to care for them.Their income has been cut to just what her hubby brings home.They have no money for any thing extra.They have skipped taking a vacation the past year as there just was no money.The house needs work,but it will have to wait.
Wait until when? She isn't going to get any better.
She goes on to explain about the fatigue that hits her after just a bit of house work.
She has fallen often inthe home.she like her youngest kid is back in Depends.She just lately has had to hold on to furniture or wall as she walks through the house .She has taken to using the grocery adapted electric cart at the super market just to make it through
. Your thoughts are how can it come to this in just two years.Then another starts to
talk and after it started to show in her gait and she at the young age of 32 had to start
using either crutches or a walker everytime she left the house.There hasn't been any Saturday night dancing for her in over two years.She suspects her hubby is not working late but has a new flame to entertain.If she lives up to the usual stats for MS affected persons he will run out of the marriage.

You are now only just 30,and you start to wonder what it might be like in another
10 or worse yet 20 years. Now should be the best time of your life.But seeing these
people you are now not to sure of your own future.The older ones notice the scared expression on your face they will try to tell you not everyone will end up in a wheelchair as they are.You are thinking how does she know how my MS will go?

The whole meeting so spooked you that you probably will not return for a long time if ever.But then as you leave deep down in you start having doubts.maybe the doctor made a mistake.Probably not as they took enough time while you waited to tell you .Then you tell
yourself there are at least 4 types of MS Maybe mine is Begnign.But less tahn 10% are such
The vast majority are Relapse/remission MS.But then you hear 50 to 60 % of these become
secondary progressive.You look up the term The defination sound horrible, a disease style
with no return of former self.Disabilitys are stacked upon each other.
yes this is a damn hard disease to adapt to at any stage. Then you read you could be
among the 15 % that start out with Primary progressive and get slowly worse and never have a remission.

As time goes by you have another attack and this one land you in the hospital.Your are pumped full of steroids to get you better,but they will make you like you are off the wall,sleep will not come easy.Finally after 5 days you are discharged and gradually the symptoms seem to disapear.This is now your first real remission.It lasts for almost a year and then the stress of the holidays and you start a new attack .this seems worse than the first two.Again you land in the hospital,more steroids.This time your gait is affected at the time you check out of the hospital so a walker is sold to you.
You swear you will only use it inside at home where nobody will see you with it.
Then after the first week you get cabin fever and are just dying to get out.But realize you will probably fall on your butt without the walker.Maybe your hubby could link arms with you and assist to hold you up.

After you finnally are able to put the walker in the closet and do some walking on
your own ,you do notice a still slight limp is still there.But give it no mind .
You are proud of standing on your own two legs with out any assistive devices.
Again the remission is back and with this difference the fatigue level is still
there .You are prescribed Amantodine to take the edge off the fatigue.But its still with
you,may not a sbad but enough so working becomes a greater chore.You are just totally
beat when you finally arive home but then there is still teh children,and hubby,the house,and you decide to eliminate some of the social life as the house and family is all you can manage.
The so calle dremission goes on for about another year of so,then BANG,you are finding walking a chore again.You pull out the walker out of the closet.It helps,and you notice
with it you aren't as tired.But this one while not the dilly the last one was you still
are prescribed some steroids by pills .The feeling of dependance on the walker seem
not to go away too soon.Your therapist the doctor sent you to tells you maybe a cane is in order.She wips one out for you to try.gradually you condecend to use it.You sign a paper an dyou have just bought it.In your mind only old people are cane users then you remember some from the group who were the same age as yourself They were sporting fancy canes .You think I need something beside this stainless steel cane.It send all teh wrong signals.
Again you decide to return to the support group.Denial is finished and acceptance of how it is now for you has started.

With all the progress being made in the research of MS,and new products coming on the market soon,you will soon get off the hook and be back to normal.The vacination for MS will let you live with MS much better than the three ABC drugs which are just delayers of mor MS.
The new stuff will sort of "freeze" your MS ar the level it is now.While its not a cure
you will be in better shape for when the cure comes.
Now the next question is what if MS has ravaged your body too fast.This is most unfortunate.The vacination will just leave you as you are ,not getting any worse.
This is a very tough disease,few at the present time get off easy as the years roll by.
I would be lying to you to give you a sweet message.
Those that do render such a message are counting on chickens not yet hatched.
Many are expecting diet or some other long heralded "false cure "to rescue them.

Eileen Lukeman and Richard Tanner

FL.

Eileen(Lobosgirl) and Richard (RET1000) both at aol.com

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Page Updated Sat Jun 6, 2009 11:17am EDT