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LiberalLoner

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Member since: Fri Nov 20, 2009, 01:17 PM
Number of posts: 6,096

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Not sure what is wrong with me.

Was in the neurology ICU a couple years ago for a week with what was diagnosed as Guillain Barre Syndrome. Got better slowly, then in the last year I've been having bad spells again. Didn't want to bug the docs so I was trying to just tough them out. (Army docs, especially neurologists, are very busy these days.)

Well, this bad spell was a little worse than the other ones and the bad spells are coming closer together and I finally decided to bite the bullet and go to the doctor.

Now, two years ago, my spinal fluid showed ogoclonal bands (something like that, unsure of spelling) that indicate either MS or GBS. The doc thought the case presented more like GBS than MS so I was reassured.

They checked my reflexes. Knees great, ankle reflexes mute (absent) and a positive babinski's reflex (not a good thing) on the bottom of the foot.

Doc wanted me in an MRI that evening and admitted to hospital again. I tried, I really tried. My first time in a traditional small-bore closed MRI. Long very narrow tube. Had a panic attack/claustrophobia. I never even knew I was claustrophobic. Just could not do it. Doctors were pissed, don't blame them one bit, I was being a big baby. Anyway we will try again when there is another opening, but this time the doc prescribed me 10mg valium with another 10 in reserve just in case. Full spine MRI and brain MRI. Hopefully I can get ahold of myself with the help of the valium, this time I will not open my eyes in the tube, and I will be okay.

So, back to the labs today, another dozen or so vials of blood drawn. Lots of tests I guess. Referral to neuromuscular clinic in neurology.

Not feeling that great, low energy, just want to lie in bed all day, have to force myself to get up and do stuff. numb feet and semi-numb legs.

Doc thinks it's either CIPD (chronic form of GBS) or MS or possibly something wrong (tumor?) in my spinal cord/brain. We'll see.

I'm actually more afraid of failing to endure the MRI, than I am of the actual disease. I don't want to fail again. And I have to do it there, Army does not give choices.

Thank you for listening, just wanted to tell my story I think.

Oh, went back home with hubby, who told the doc he'd bring me back in if I got a lot worse, had trouble breathing/swallowing etc. I am glad I'm home, did not want to be hospitalized again.
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