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Old 08-19-2009, 07:22 PM #26
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Freesia38 Freesia38 is offline
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Location: Australia
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Freesia38 Freesia38 is offline
Member
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Join Date: Jul 2009
Location: Australia
Posts: 108
15 yr Member
Default I'm in limbo too

Hi Susie,

I completely understand what you're going through!

My symptoms are driving me crazy - I'm frustrated, I cry most days, I can't do what i want with my 2 young boys (i'm also a single Mum) and I just want answers like you!!
Like you, my gait is effected too - I can't stand for more than 5-10 mins either, and at the shops I shuffle on a bad day, or on a good day I limp.
I did apply to the council and got a disabled sticker, even without a diagnosis - category 2 - which just gives me double the time in a car parking space. (can't park in a disabled space). But it helps a bit.
It doesn't effect my eyes, but I have lots of tingling, numbness, burning, stabbing pains, heat intolerant, rib pain lately, that might be the 'MS hug'....

My first brain & c-spine MRI and VEP were clear back in May. Contrast wasn't used. I'm due for a T-spine MRI in 10 days, 1 hour!! (not counting at all....)
My bloods are all clear - although Epstein Barr was also detected. (I think I had it as a teenager).

Someone correct me if I'm wrong, but is there a link between EBV and MS??

My sister has probable MS, and my aunt has it. (I've read there's a very small chance -10-15% of having MS if a family member has it).

My neuro tried oral steroids for me.
It only worked for the tingling and some numbness, and made me really tired. But it IS different for everybody. From what I've read on this forum it has helped a lot of people though.
Your neuro will discuss the side effects etc with you before prescribing. It's your decision though.

Please PM me at any time - the serach for 'finding out what's wrong' really sucks, and we need all the support we can get at this time.



Michelle
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Michelle, 50yo, Australia
No dx - just questions.
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