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Old 10-30-2009, 05:59 AM #1
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Default Vent from Limbo Island

Hi all,

I guess I'm posting to have a vent, and maybe gain some advice too?!

The lowdown: My neuro has given up, says it not MS though, but doesn't know what, and has referred to me 2nd neuro who I see in 3 weeks.
great, hope for some answers.

in the meantime the pattern of flare-up of sx seems to be for a week, then settles for about 3-4 weeks. (still with sx, but mild).
At the moment it's flaring, and this time the pins and needles/prickles are much worse.
yuk.

I'd been avoiding phoning my aunt with MS - hadn't spoken to her for 25 years! It was great to chat, but not good to hear her sx and me agreeing with some of hers.
But OMgoodness it was HILARIOUS when we had both forgotten what she was talking about!!! lol. She said, "oh I get forgetful", and I laughed and said, 'Don't worry so do I"...."Now what were we talking about?".
A positive experience, but in my face too - along with chatting to my sister 2 days before who has a 'maybe MS' dx.

I've just got great news of a new job next February (yay!) Only 9hrs a week, but still scary having a committment. my youngest son starts school next year, so that's why i'm looking for a permanent job. Currently I can cancel work (with an agency) if I'm 'unwell', but this new job won't be so easy.
I'm worried about trying to hide it.
I'll be preschool teaching - on my feet.
I have probs with my legs....

Any suggestions on the job dilemma?
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Old 10-30-2009, 08:29 AM #2
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I'm glad you're going for a 2nd opinion, and it's only 3 wks away. Get copies of all your tests, keep a journal of what's going on (I used to say sx, but keep track of everything - meds, everything!).

BUT - and this is important - go on and live your life, best you can. Having other things on your mind will help to keep you from thinking too much.

I got too wound up, honestly. And it's hard not to. It's so frustrating, so scary.

We used to do a weekly limbo check in and I would see ALL the time, not just me, but probly 80-90% of us, would have an onslaught of sx the first year or two. It calms down, trust me. I think the STRESS of it all really ramps it up. I still flare, it still irks me, but I'm not as scared.

I don't think I bring on anywhere near as much as I used to.

I think that's cool you can talk to your aunt. Get her talking about all the things she has done, and all she still does. And think about all the things YOU still want to do.

While in limbo, I built a shed, put up a fence and remodeled a bathroom with dh. I started writing again and got published. It ain't over till the fat lady sings.


Congrats on your job!
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Old 10-30-2009, 12:01 PM #3
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((((((((Freesia)))))))))

Good advice from Brain..
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