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

[twist330]

I have to agree with you,all my neuro will sat it is "it may last a year or 2 then dissappear or it maybe here for life". Also it causes many problems as to what you tell people. I recently renewed my travel insurance and it caused all sorts of issues.

[figuerpa]

My biggest fear as of now is not finding a dx. I am scared that I will live like this the rest of my life without having a name to put to what is going on with me.

I can't really add to what my biggest fear is about MS because I am not dx'd but if I were to get dx'd I think my biggest fear would be not being able to walk or swallow. I have problem with both of those now at times.

I have a cane handy for long distance walking and sometimes I can't even swallow my own spit.

So those are my fear but as I said my biggest fear is never having a name to put to what is going on with me.

Paula

[Sumanadevii]

I think fear, like anger, is just an emotion.  It is what we do with that fear that will tell the story.  Do we let it control or life or do we control it?  Fear is a normal human emotion.  To pretend we have no fear is silly.  We all do.

[HVAC]

My biggest fear was this was too expensive an illness and I would become a burden to my family. This has come to pass.I am now having to make twelve monthly payments to cover my last Neuro Exam with MRI at close to $1000 and yes I am on the State Employees Insurance Plan the biggest in the State. In six months I will need another $300 to see the Neuro which will go on 12 monthly payments while I am still paying on the other. So I will be paying Duke Hospital for the rest of my life.

Alex

[Eyesnlegs]

I think mine is all of the above:

I am the main breadwinner in the house earning 4 times the salary my DH does - bless him for all his hard work!

So workwise it was losing my job and having to live on benefits, then not losing my job and having to keep working when it is so obviously making me worse.

Like Lulu I came very late to a career after being married to a pyscho for a number of years (no not an exaggeration and actual dx-  ask me sometime about it) I married my wonderful better half and he packed me back of to finish my education. So I have only been contributing to retirement for some 14 years.

I get scared of losing my independence more than anything else and needing my DH to turn into a total carer instead of a lover.

Most of all I fear this bitterness I still feel will follow me all my life and I will never stay cheerful whilst facing all this as others seem to.

I know you are right ess but it is sooooo hard, when my days are filled with sitting in an office doing stuff that I used to love and now resent as it seems so trivail and it takes the little energy I do have to enjoy life. Work/life balance with half a cake eh?

Pat

[essdipity]

I am rather like Dennis. I can't say I have any big fears about MS.

Maybe it's because I'm one of the oldest here, but I've seen and lived a lot of life, and hope I've gotten wiser in the process. I've learned that the vast majority of what gets worried about never happens. I've learned that there are far worse things than physical disability, having lived through some myself.

The biggest thing I've learned is that worry and fear only serve to corrupt today. I don't want to ruin what might be a pleasant and useful time by projecting a lot of fears about the unknown. What is going to happen will happen. Why have that experience twice---once by our fear of it, and once by the reality?

A thousand years or so ago, when I was in eigth or ninth grade, we read Julius Caesar. Old Shakespeare had it right:  'The valiant never taste of death but once.'

ess