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

[shermay]

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

[Wobbly]

Hi hon.. sorry to hear your going through this, your not alone and we are here for you.  Wish we could be closer to help out as well.  

Its just not right when a Dr is so blunt and comes out with things like this.... I agree with Quix that it could have been done differently,  I too just got a Power Chair and when I got it I felt like I don't need this chair, but with the heat here, I can barely move my legs to get around and my arm is so weak as well.... so I'm using it and feel OK with it.  

Change is not easy for people, but we do adjust to it and I wish you all the strength you will need to go through these changes.. now, listen to your body and if you need help with things, get some...OK..

take care friend and stay in touch
wobbly
Hugs...

[mamiJ]

I am so sorry to hear this.

I pray that you and your family will be given the strength you need to get through whatever may come your way.

Isnt it terrible how some doctors give morbid predictions so casually?

Like others have said, nothing is exact in medicine...anything can happen.

have you or can you get a second opinion?

take care

[Sparkysarah]

Some days are just so crap that nothing can help to ease the pain and fear. I would urge you to listen to what some of the other folks have said. I loved Audrey's quotes and think they should be put somewhere for everyone to read. I also agree with Quix about your kids..particularly your youngest son who would benefit from some honest discussion in simple terms...possibly from someone else...you have enough to cope with

It is not your job to be being strong for the rest of the family...but this is what I think Mums are conditioned to do...as we all want to protect our kids. I personally believe that fear of the unknown can play terrible tricks on the mind whereas reality and facts is easier to deal with.

All any of us know is now as in the next minute anythhing could happen or change and this could be positive or negative. So the easiest thing with younger kids is to stick with what is going on now rather than the what ifs and maybes. They will absorb as much as they can take and will zone out too much information or what they are not ready to hear. However if it much better to be honest and your son needs to know that you are not about to die and you will still be the same Mum who loves him..but just may need more support and help (and that this will not be his repsonbiility!)

I think that your neuro or do you have your own MS nurse should be involving your whole family and giving them the opportunity to ask the questions that may be hard for you to answer. There are times when it is just too damn hard to stay strong any longer and yes you can of course reach out to each and every one of us on this great forum.....but we are not there in person in your everyday life and so you need to be able to also seek the support from those who love you ..your family and friends.

I shall be thinking of you and praying that you are given inner strength to help you cope with whatever you are sent....Sending you huge electronic hugs and also praying that these are turned into tactile real hugs from those around you.

Sarah xxxxx

[beema36]

Shermay I am sorry. I do understand as one week ago my neuro told me same thing. I just feel the risks of tysabti r too great and at this point told Dr no. He was angry but its my life. I may change my mind at some point. Who knows. Don't have answer for u but I know how u feel. It's devastating and my whole families in denial. Ur in my thoughts and prayers.

[Valerie64]

Debs

I can't add anything else or anything medical but know you're in my and everyone else thoughts and prayers, willing you the strength to cope with this

Val x

[Quixotic1]

Debs, I'm sorry the doc had to put you and your family in this frame of mind.  It's sad when a doc finds it necessary to hang black crepe paper and make terrible predictions when it would have worked much better to discuss what is likely in your future sooner or later.  She could have raised the possibility of you needing a power chair or scooter soon and recommended that you and your family begin planning on making sure that your home is wheelchair accessible.  But, just as the doctor last year was off-base in his predictions, she might be, too.

You don't have an expiration date for freshness or for being able to walk.

As a pediatrician, I would recommend very open discussions with your youngest now.  Kids are often far more intuitive than we know, and they also have vivid imaginations.  If they know something is wrong with mommy, but don't have any information, they WILL assume the worst.  Not only will they fear that you are dying, but they will think of all the times they wanted to do things and you couldn't - then they will blame themselves for what is happening to you.  Talk to him openly about how you are not dying and he is not responsible.

I'm hoping something bad will happen to this doctor next time she decides to predict the future.  Industrial-strength gas pains or something.

HUGS from over here.

Quix

[supermum_ms]

Dear Debs,

I'm so sorry your going through such a horrific time, please stay strong and not buy into this prediction. It is just a prediction, no one can say with certainty what will happen with this MySterious disease. It is true we have first hand accounts from MSers who have been wheelchair dependant after a relapse, then months or years later they are walking again. No one can predict with 100% accuracy, so please stay strong and fight!!!

A true medical mistakes I know of:

My brother in law at 47, had all the tests available to rule out a heart condition, all the males in his family have had heart attacks before they were 50. All his tests were negative, he was told he had a strong and healthy heart, his heart was in perfect condition etc. Less than 24 hours later he started to cough, he didn't have any of the main heart attack signs but still he went into full cardiac arrest, and was fighting for his life. Today they use his case to teach doctors that there is no certainty in medicine.

Please stay strong, the prediction you've been given, just doen't make it true!

[[[[[[[[[[[[[HUGS]]]]]]]]]]]]]]]]

JJ

[rendean]

Debs,

I am so sorry to hear this news about your condition. Perhaps it is time for the Tysabari. There are many checks and balances in place here in the US before any Tysabri infusions are given.

This may well be the next step for you, especially if your mobility is threatened other wise.  You need to be the strong woman you are and things will turn out for the best in the long run. I certainly would NOT be giving up hope. Like others have mentioned , you have weathered this storm before and and came out on the other side.

Sending hugs , love and hope to you across the many miles'
Ren

[michelleric]

(((Debs))),

I am sorry to hear this news has come around again for you.   Be strong, you are strong and perhaps Tysabri might be the right thing for you?

Just want you to know that I am thinking of you and sending many many hugs across the miles...
Michelle

[essdipity]

I'm pulling for you, Debs. Have you decided to start with Tysabri? That might be the best idea even though it has risks.

I do remember your post last year and yes, this is eerily similar. But you have been through so much and come out the other side, and I just know that you can do it again this time. I'm sending you big hugs and high hopes.

Love,
ess

[Guitar_grrrl]

Ahh, Debs, my dear friend, I send big hugs and banging out loud, angry rifs on my guitar toward your neuro.  I realize she is educated, but probably more than a little socially inept. Like Jess said, she's pretty sure your neuro is not God, I tend to agree.

You might try the Tysabri - who knows, maybe you'll get a little relief like I did.  Everybody's a little bit different.  I, for one, am tolerating it well.  Yeah, it's expensive, and yeah, I'd like to making the $$$ that Biogen's CEO is making, but if it helps, even a little...I pray if you try it, it slows this MonSter down!

Your family sounds wonderful!  I wish I could help reassure Etienne Mommy will always be Mommy, and she isn't going anywhere soon.  I feel the strong love you have for all of them clear out here some 6500 miles away.

Once I cool down the angry rifs, I'll play California Dreamin' and a cool new arrangement of Moondance I'm working on...

[HVAC]

I am sorry I do not know what to say.

Alex

[Mand125]

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

[lovemy6monkeys]

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

[Sumanadevii]

I think the doctor is a silly goose.  We are all dying.  Does he know that?

[jujuminx]

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

[Sarahsmom46]

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

[deborah0904]

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

[tarter]

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

[starryeyes1]

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

[Audrey_M]

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

[figuerpa]

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

[MonkeyMom4]

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!

[michelleislay]

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