What did you tell people prior to diagnosis?

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What did you tell people prior to diagnosis?

Postby nicolajames » Sun Mar 10, 2013 2:55 pm

Hello all.

I'm new here and beginning to have some investigations due to odd symptoms. I asked outright if MS was a suspicion (I'm a nurse and have a close family friend with MS so it wasn't a huge surprise this was a consideration) but I'm 100% open to the possibility it could be anything else or nothing my GP has said yes it's a possibility so I'm not about to start claiming its something I have. But what did/do you tell people about your symptoms?

For example, I'm having some problems with my vision and when this is an issue I don't drive, I have to tell people why I'm not driving if I should have been driving e.g. at work or when I'd agreed to drive somewhere. My explanation of my vision problems elicits either a really annoying 'hmmm it's in your mind/you're an attention seeker' or a worse 'oh my god you must have a brain tumor' *panic panic freakout*. Which is kind of understandable when I'm telling you out of nowhere that my eyes have gone crazy.

I haven't been sharing much about it with other people (I don't have much of a family & friends co-workers don't need to freak out yet) but it is odd what people notice, I do a lot of public speaking and a few days ago someone remarked that I was a fellow 'leftie' I'm not I just hold a mic in my left hand as I know I can't hold things for too long in my right (dominant) hand and it looks clumsy passing between the two. I'll look crackers agreeing with them if they then see me writing with my right hand but telling them I can't use my right as well doesn't make me look less silly.

I have no desire to be defensive (or dare I say it rude) as I think people are generally concerned or just curious but I'm always at a loss as to what to say. How did you all explain stuff?
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Re: What did you tell people prior to diagnosis?

Postby lyndacarol » Sun Mar 10, 2013 3:31 pm

Welcome to ThisIsMS, Nicola.

As a nurse, you know that it might be MS… OR it might not be MS. Also as a nurse, you probably maintain your calm and self-control in difficult situations. You know that people around you take their cues from you. I wonder why you must tell people the reason you are not driving; can you nonchalantly say that you have a virus, or the heat, or the bright sunshine or lights is causing temporary vision problems – or your new glasses haven't come in yet – or any other excuse? After all, you don't have a definitive diagnosis.

As for the "leftie" situation… just tell them you are ambidextrous.

You are very understanding of other people's feelings; I commend you for wanting to avoid appearing defensive or rude. There is always the "thank you for your concern; I'm still investigating the situation." All the best to you.
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Re: What did you tell people prior to diagnosis?

Postby MarkLavelle » Sun Mar 10, 2013 5:33 pm

"I've got some weird nerve thing going on that the neurologist hasn't figured out yet."

I still use that for most co-workers, but friends and family know about the MS dx.

RRMS dx 3/3/11; Copaxone since 12/1/11
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