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Old 03-01-2007, 07:02 PM   #1
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Unhappy Sword of Damocles.

So I just got back from my neuro followup.
the VEMP and OAE were all great.
the doc saw me (which was not expected) and did a brief neuro exam.
still cant feel half my face....eyes still missing their targets, especially on the right...my feet flex with stimulation and its huuuurts to have them touched on the bottoms.
im hyper-reflexive, still spasming and tingling, with zings all over the place.

doc said he is strongly learning toward MS.

except the MRI hasnt changed in 6 months.
so we have to do either A: a spinal tap
or b: wait until i go blind or am partially paralyzed.

the reasoning is this:
do the spinal tap full of needly goodness and some risk involved, and it comes out negative or positive. because an LP isnt a true indicator, just a suggested test, it really isnt 100% even with pos. obands.
if it is possitive, and we move to Dx, hes put me on a weekly injection. but my symptoms arent (at this time) severe or incapacitating enough that they would make a huge amount of difference, and id be using an extremely expensive medication and injecting myself (more needly goodness) every week.
so in order to gain closure, the psychological benefit of Dx,
do you risk the physical risks? do you set yourself up into a position of more risk to gain psychological closure?

if i go blind, then that warrants needles, i think. but right now, u have to ask, is it worth it?
my conscience says holy crap yes, and my body says "be reasonable and stop being emotional. dont put yourself in any more risk or pain. it could always be worse."

we decided at this point, no, and i would come back in 6 months for another neuro exam, or sooner if something crazy happens.

well, at least ill save a ton of money on my healthcare costs!
ugh

 
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Old 03-01-2007, 07:20 PM   #2
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Re: Sword of Damocles.

I was kind of like you in that I wanted to wait and see, but my husband and the Nero convinced me that even though I was scared of the spinal tap, it would allow me to know "for sure" if I had MS or not. (I did and do.)

I still procrastinated the whole weekly injection thing for a couple of months due to health care insurance issues, but ultimately I did start the injections.

I am into my third month now (Avonex) and I am having fewer attacks, less sensitivity to heat and cold, fewer "shakes" and no more optical problems. Oh and I also don't get any of those bad flu symptoms some people get on Avonex.

I encourage you to get the LP next time around and get on medicine if it is necessary (if you have MS).

It is ungodly expensive to be on this stuff; I can see your point. Six months times $500 a pop makes a big dent in the old finances!

So Cal Holly

 
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