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Multiple Sclerosis Community
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923105 tn?1341831249

oh no:((( Too scared - reaching out for support

This is like quid pro quo:(.

I had an appointment with my new MS Neuro yesterday, and she told me (after the results of my new MRI) that she wants me to go on Tysabri and that I will be most certainly a  paraplegic in a few months time!  My Neuro actually called me today (Sunday pm ) that's really going something in France!

I posted this very same thread about a year ago, and was so scared - but now with my 3rd Neuro telling me this I guess I'm in trouble here guys..

Everything seems to be shutting down on me, spasms, bladder, bowels eyes and swallowing etc., where else can I turn to apart from my friends here - who know what I am going through.

My D/H is in total denail, my eldest Son Jonathan who left on Friday is horrified (emailed him today to tell him the news)  Etienne (youngest) thinks that I am going to die - even though we have done our best to keep it quiet, but he has seen me and William crying:((  

Oh, please help me forum friends as I am in such a mess.  

I know this post is short, but I really can't type anymore, and I realise that responses will be few and far between because of the weekend, but I just couldn't keep it in any longer.

Love and hugs to all

Debs xx



24 Responses
1386048 tn?1281015933
i'm no expert, so sorry to say i don't have advice, but i just wanted you to know that i have read your post.

i am so sorry to hear of what you (and your family) are going through.

my heart goes out to you and i am sending all love and positive thoughts your way from canada.

xoxo  michelle
1406332 tn?1315966360
I'm sorry you and your family are going through such a stressful time. Don't ever give up hope.

Sending all of you lots of love and prayers from Nebraska!
1396846 tn?1332463110

i can't be of much help either. I just want to say that my thoughts and prayers are with you. Keep your head up and keep fighting. This is such hard news for me to digest so I can't imagine what it is like for you.


I really wish you the best and I am sending many hugs your way.

(((((((HUGS)))))))
Paula
1260255 tn?1288658164
Debs:

Hard to imagine what you must be going through, having heard this not once, but twice. If I were in your shoes, I guess that I would sit down with my neuro and talk this through in terms of time, impact, lining up support for me and then my family, so that they understand what is going on. I'd also probably throw in the question "What are the odds this may not happen?"

Given that you have heard this twice, I tired to find some inspirational quotes that might help you at this time:

“A wise man should consider that health is the greatest of human blessings, and learn how by his own thought to derive benefit from his illnesses.”
Hippocrates quotes

"There cannot be a crisis next week.  My schedule is already full."
~ Henry Kissinger

"Be who you are and say what you feel because people who mind don't matter and people who matter don't mind."
~Dr Seuss

"Yesterday is history, tomorrow is a mystery, today is a gift, that's why we call it the "present".

Enjoy your "present" of life to the fullest."
~Unknown

"Whatever the struggle, continue the climb, it may be only one more step to the summit."
~Diane Westlake

"If suffering brings wisdom, I would wish to be less wise"
~W.B. Yeats

"I wanted to be the first woman to burn her bra, but it would have taken the fire department four days to put it out."
~Dolly Parton (don't know why this was in there- my guess is for breast cancer survivors- I included it because it was a LOL for me, especially being a AA cup size).

Sometimes the doctors are right, sometimes they are wrong. I truly wish that they are wrong at this juncture and that you do not end up a paraplegic. If in fact they are right, I hope you find the support you need, both emotionally and physically to deal with that hurdle and if your time and resources allow, put some healing energy from your disability to help others.

My thoughts are with you for the best possible outcome.

Audrey

Avatar universal
Very sorry to read this post and what your going thru. This disease is so scary and none of us know what the future may hold.

My thoughts to you are to have faith that it is going to be ok. I know this is hard to believe given the info you received, but for myself, that is the only thing that gets me thru the day..and the next..and the next.

I will say prayers up to God to help heal you..even if it is just to keep you from being paralyzed. I will pray for your family to be strong thru this terrifying time.

As someone else said, Dr's can be wrong.

You're in my prayers. I believe that God works miracles every day.
Take care, my friend.

Kristi
1080243 tn?1262978963
Dear Shermay,

Have just read your post 'Please dont give up hope, this time last year my neuro told me something not un simular and one year on I'm in remission!

I've found if I keep moving and exercise every day I keep the problems at bay.
Nothing is clear cut with this wide spread desease.

You sound like you have a great family so you will have alot of support to get you through.
My husband has MS now and he his having bad days but i encourage him to mobilise  what ever the weather. He now too notices that if he his stationed for lond periods at a time when his dibilitating fatigue sets in he feels like his legs seize up.

So Shermay thinks positive and dont give up you have many freinds here.


Carole

Avatar universal
I'm so sorry to hear that you are going through this.  I can't imagine the sadness and fear.  I do have RRMS but am able to be mobile.  My thoughts and prayers are with you.

Deborah0904
559187 tn?1330786456
Oh no how can this be happening.  I remember your post last year and how scared you were and not sure if what the neuro at that time about going on Tysabri was correct.  I can't believe it has been a year.

So, first off.  Remember that guy telling you that you would be in a wheelchair within a few months?  Are you?  How would you compare where you are now with back then and the dire consequences they had predicted?  

I am so sorry and saddened to hear that things are shutting down. Have you given any further thought to Tysabri?  Is Tysabri the only option at this point?

Debs, I wish I had a magic wand that could wave this all away or at least slow it down.  You know that we are all with you in spirit and you certainly came to the right place for this much needed support.   You know that many others will be along soon to offer their support as well. In the meantime, hang in there and resolve to fight this as hard as you can.

Many hugs,

Julie
1382889 tn?1505074793
I am so sorry to hear what you are going thru. What a scary thing the doctors are telling you.  Just remember, as we all know, the doctors are often wrong! Keep praying and we will also pray for you.  I will pray for your strength, for peace, and for healing.  Know we are all sending good thoughts to you and your loved ones.  Just take it a moment at a time.

Julie
1394601 tn?1328035908
I think the doctor is a silly goose.  We are all dying.  Does he know that?
1207048 tn?1282177904
I am pretty sure that neuro's are not God, no matter how much they would like to think they are. You have heard "guesstimates" of how you are going to progress. You are strong, Debs. Take some time to process this, then get back in the game and fight your best fight.

((hugs)) lots and lots of ((hugs)) for you and your family.
~Jess

Avatar universal
I am so sorry that you are going through this, I don't have any words of wisdom but just want to say that my thoughts are with you.

Mand
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