Sucks to be posting here

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Sucks to be posting here

Postby Luongo » Sat Jan 15, 2011 6:04 pm

Depressing that I find myself having to post here... I believe I have the misfortune of being the next to join this wretched club.

I believe I have MS. Come to find out that after voracious research, there really isn't any 'good news' about this disease. The best news is that it might only suck a little bit.

Maybe you guys (which seems like a great community) can share some insight... this whole mess started with slight bit of numbness on a small part of my toe. It went away a few weeks later. 8 months later, the same numbness occurred on the same part of the toe on the other foot. Was gone by the time I woke up the next morning. This was accompanied by visual abnormalites... 'blurry' or 'double vision' does not describe it accurately, and a month later I still have it, and still lack an accurate way of describing my visual problems. I also have what my neurologist describes as 'extremely jittery reflexes.' He did that old bonk on the knee trick to test my reflexes and my leg damn near flew up and smacked him in the face. In general, I am a bit jerky and jittery. I've also had neck stiffness on and off for several years now... I'm not sure if it's related, but it's also acting up right now.

So I had an MRI (no dye). Results were normal... I realize that you can have MS and get a clean MRI, but it is what it is. Went to the opthamologist... said I show no inflammation of the optic nerve, and it doesn't seem like optic neuritis. When I had the initial toe numbness, the neuro strapped a bunch of electrodes on my leg and zapped me to test the nerves and it showed no damage. Had an x-ray done on my neck to see if there was some spinal damage causing the fuss, but it came out normal, other than some arthritis.

So! I don't know what else to do. My eyes are still a mess, but the opthamologist is at a loss. I hear a lumbar puncture is the next standard protocol, but it doesn't sound like a rollicking good time. Any suggestions? I'm sure when this thing becomes official (which I feel is only a matter of time) I will be using this forum as a mass dumping ground of emotional ranting, so I think I should probably get to know people here. Cheers.
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Postby Lyon » Sat Jan 15, 2011 6:22 pm

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Last edited by Lyon on Sun Nov 20, 2011 3:41 pm, edited 1 time in total.
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Postby Luongo » Sun Jan 16, 2011 12:12 pm

Thanks for the response... I have a ton of questions to ask. When I get some free time I'm gonna drop a bomb of queries on you lovely folks.
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Postby erinc14 » Sun Jan 16, 2011 2:14 pm

http://multiplesclerosissucks.com/

this was written way before we knew about ccsvi and it's connection to ms but it's interesting
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Postby ppicklee » Sun Jan 16, 2011 2:28 pm

Hey Luongo! I send you out my welcome. Also my agreement with Lyon. There are more tests to run before we can say it is time to do a lumbar puncture. Don't get ahead of yourself by thinking "crap... really?" Stay positive cause there's always SOMETHING good.
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