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

[doublevision1]

I think my initial biggest fear involved ending up in a wheelchair, the stereotype of a person with MS.  Actually this is probably still my biggest fear, though I'm not hysterical about it like I was when I was first dx'ed.  Knowing more now than I did then, I realize many with MS never end up in this situation.

In those early days, I was very tearful when dx'ed, whenever I spoke about MS.  I could hardly say these two little letters without choking up.  I rembember breaking down in the MS nurse's office the first time I met her.  She tried to reassure me by telling me I wouldn't die from MS.  I remember thinking this sounded absurd...dying hadn't even occurreds to me....I wasn't afraid of dying from MS, I was afraid of living with it.

My biggest fear related to my actual symptoms at that time was never recovering normal vision.  It is probably 95% back to normal now after a year or so of persistently seeing double and looking cross-eyed.

I also feared people finding out that I had MS.  I was very secretive because I felt ashamed about it.  I dreaded the thought of people pitying me.  I'm over that now.


What I didn't worry about early on that some others might:
- treatment/self injections: the sooner I got started the better, I just wanted to DO something about it;
- health care costs: I took it for granted that my specialists appts and meds are covered, though I don't take it for granted anymore now that I know how expensive the meds are, and esp after hearing how even those WITH insurance don't always get covered in the U.S (not to mention those with no coverage at all);
- it didn't occur to me to be worried about incontinence, only because I had no idea at the time that this was an MS symptom; had I known, I think I would have feared this as much as or more than ending up in a wheelchair.

[Sumanadevii]

My biggest fear was I would become a burden to my husband.  I have seen made plans for my care (which he can oversee) if the time should come.  

Anxiety is a terrible thing to live with.  I was in the emergency room last night unable to breath and scared to death.  I couldn't get my breath.  Naturally they ran all the tests.  All coming back negative.  It is just the legion on my brain stem.  I was given steriods, and an inhaler.  I saw my doctor this morning and we both agreed, I need anxiety medication for it.  I feel like a blanket is being thrown over my head and I can't breathe.

For each of us, we all react differently.  Those who know the real me would never see me needing something for anxiety.  Just not a person to get uptight.

[Lulu54]

Wow, Shell.  this is quite the question.  

for me my biggest fear has been to not let my MS become a financial drain on our retirement funds.  It's bad enough that our 401K's have been hit hard by the erratic stock market and will undoubtedly push off our retirement age a few more years.  

I stayed home for 14 years while my hcildren were young and was not in the workforce, coontributing to a retirement account. That put me a bit behind, but I have tried to make it up the last 20 years since I have been employed.    DH has always funded his own retirement accounts.  We're also counting on social security to still be around in about 8 years.  

Second greatest fear is being unable to work and having to go on disability.  I cover the insurance for both of us and it would be horribly expensive to get insurance for DH and myself, since we both have major preexisting conditions.  


Who else?  

Lu

[Quixotic1]

Thank you so much for bringing this topic up.  Looking at the forum in the last few days the titles are loaded with the words "scared", "terrified" "death".   It gets hard to talk about people's fears without saying the same thing to everyone.  Everyone gets scared sometimes,  we all make it through, we all will support you as you talk through it, and be sure that if you are dealing with uncontrolled anxiety over your health and future that you get it treated.

I thought my MS started after I had already lost my profession to vertigo, my security to bankruptcy and my emotional stability to a nasty divorce.  So when I suddenly could barely use my right leg - it just seemed like the next bad thing I had to deal with.  

However, once I got the diagnosis of MS, the thing that I feared most or, at least dreaded most, was becoming incontinent.I thought most everything else seemed handle-able.  And so, the worst scenario actually did arrive and is at max.  I am completely incontinent of urine.  And while it is a drag and a half, it has become just something I deal with on an hour to hour basis.   It has cut tremendously into my competitive ballroom dancing competition, but what are my options?  It's certainly not like I can ignore it and pretend it is not happening.

I think that I make it through one part of a day at a time.  Sounds very cliche, but there is a reason that it became a cliche' in the first place.  

It took a few years for me to find something to replace the career with - something that gave my life meaning.  And that is this forum.

In my family there was never much emphasis put on worry.  It was considered a waste of energy and led to nothing, but more worry and terror.

If I could make any recommendation to people immobilized by fear it would be to write down exactly what they are afraid of and seek the answers to those worries.  It would also be to seek medical and/or psychological help for uncontrolled anxiety.  True wild anxiety and fright can cause significant neurological-seeming symptoms.  Once the anxiety is controlled a person and their doctors can see what is left to investigate.

When a person presents to a doctor terrified of things for which they have no evidence, the doctors' first reaction is often to dismiss them and shoo them out the door.  This doesn't help anyone, but adds anger and frustration to the person's plate.  

Quix