What is (or was) your biggest fear upon diagnosis?

[sllowe]

Hi there,

We all have so many varied experiences, thought it would be good to ask what was your biggest fear when you heard you had MS? Or, one of the infamous mimics? And, I don't want to exclude our limbolanders -- you are a huge part of our family here. This is for you too! I hope this helps you too.  If even small, there had to be something you were scared of. If you feel comfortable, spill it! It's a good way for us all to get to know one another a little more.

My fear was that the Drs were wrong. As far as I was concerned, I definitely had a stroke. I wasn't afraid to have MS, just didn't believe they were right. Heck, I knew nothing about MS. And, I was smack in the middle of my 1st attack. I was definitely scared (though I'd never have admitted it to anyone then) each day waking up to what I lost most, which was the ability to think and react all at the same time - it was chewing, driving, looking, reaching, writing, listening and responding to people, etc.  Whole nother meaning to walking and chewing gum at the same time, haha

Seriously though, what got you going?

-Shell

[michelleislay]

what an excellent post...i have been waiting for the time to sit down and read through everything and it still has not come, but i wanted to quickly weigh in on it before it skips to the next page, and i will come back to read all soon.

i think for me the thing i fear most is not being taken seriously.  i haven't thought too far ahead to the future about what a diagnosis might mean to me and seem a little stuck with living in shadow of the last neuro appt., whereby i felt completely discounted.  

it's a strange place to be, because while i am truly hoping the mri's come back clean and negative for anything at all, that scenario would support the neuro's theory that i am just fine and need a little physiotherapy.

irrational i know as i now have proof that back issues are not my problem, and i will definately communicate to her next time that anxiety does not play into it for me either.

ok, and perhaps i have also spent some time worrying about how something like a dx of ms would effect my kids...

xo michelle

[johnniebear]

I guess I've had many concerns,  the biggest is how will I be able to care for my wife & family.  At 50 and self employed , can I continue to generate an income with this MS?

We surely thought at this age,  the kids are grown & gone and we are free to travel a little & think about when and where to retire--  that's all changed and I'm ok with that as long as I'm not a burden to my family..

Then all of sudden an MS moment pops up from time to time,  we took our three old Grandson to the Zoo & he wanted me to pick him up and he wanted to  ride on my shoulders-   I couldn't take the chance with the balance issues,, Thank God he is only three and forgot about it later.

Best of Health to all

John  

[supermum_ms]

I've been pondering this for a few days now, funny but thinking about this has actually made me think about things that i havent been willing or ready to do, sometimes the future is dark but i should of been a girl guide cause i've always got spare batteries lol. As odd as this will sound, i've never had to worry about anything because those i love do it all for me, I grew up hearing "you cant do that, xxx will happen and then what will you do" so i've always said "yes I can, if it happens so be it".

I would climb the tallest trees, joined a boys only club because they said I couldnt but I did. I swam miles to shore in shark in fested water (lucky they were not hungry), I didnt get the nick name JJ (jesus janice) for nothing lol. I've always thought i was strong enough to face anything, and sometimes i have had to be. I've had so many bumps in the road of life, this is just one more that i have to face, oh i'm kicking and screaming but still i will go down with a joke on my lips and a smile in my heart, I know no other way to be.

So what do i really fear, well apart from being forgotten in a dusty corner with a lamp shade on my head, I fear loosing my mind! Take my legs, my arms, my sight, take everything but do not take anymore of my mind, it is the one thing, the only thing that is the sum total of and essence of ME!!!

Cheers..........JJ

[Mand125]

Sorry OT but I just had to say I loved reading how you got your nickname (JJ).

I hope you are feeling a bit better.

Mand

[doni54]

Ummm...I have many of the same fears as some of you, but I guess my biggest fear is to never have a dx, whether it be MS or some other monster.  It's hard to live through days when you can't think, or walk or talk and your own family looks at you and you know they wonder if all this is real........sigh........

I can remember feeling validated about MS when my GP said, "You are classic MS, what's wrong with your stupid Neuro?"  That lasted a couple of months, but I KNOW without a firm dx from a neuro that I am still consider a "Limbolander".

I have gone back to work as I didn't have a choice, and it becomes really difficult to hide my health problems.  Having to get up 2 hrs earlier than most folks would, just so that I can have plenty of time to take care of bathroom duties and pray that I don't have an accident on the way to work, or at work.  

The days when the tremors take over and I'm using the computer and my fingers go nuts and click the mouse 4 or 5 times instead of one, or when I'm having to answer the phone and call people over the intercom and I can't form the words......it's just so embarrassing.

My second biggest fear is losing my eyesight.  My right eye is never clear anymore and some days practically useless.  I think I can handle the urine/bowel incontinence, the twitches, the buzzing, the burning, the spasms, the spasticity, the numb leg, the walking like Frankenstein's monster, etc., etc., etc.  But the thought of losing my eyesight..............I just don't know what I would do, or how I would ever handle that.

One bright spot is that soon I will be covered by health insurance and maybe, just maybe, I will have the opportunity to get my dx and at long last not be wandering around lost in the land of limbo.............

doni

[Jepster]

I've been thinking about this for the last couple of days and I've come to the conclusion that the reason I don't currently fear anything is because my Sx so far have been mild and have cleared up, bar pins and needles. I guess it's different reading about other people's Sx than having them yourself. 

I was diagnosed last week, mainly due to a radiologist's report stating pretty categorically (apparently) that my lesions fulfilled the McDonald criteria. Clinically I doubt I'd have come close.

Having read people's stories on these boards, in some ways I feel a bit guilty about my diagnosis - there are so many people out there in limboland who're really being hit with awful Sx and yet are being dismissed by the practitioners. Therefore I guess that my main feeling towards the Dx is 'false pretender' - I'm really, really grateful for my current position, but wish that everyone could find medical support for theirs.