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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


Interesting reading all of your responses - Thank You!

I asked because weird things have been going on the last few years and I knew something was up, but didn't really want to find out and end up with that doctor visit, tests, more visits circle.

I have seizures and have experienced these periods where my hands and feet go numb and tingle, legs and arms won't work right (sort of like they are heavy and I am dragging them thru mud and they get uncoordinated with this weird sort of tired, feeling), foggy head, trouble talking right (sort of like I have had one to many glasses of wine), my swallowing is bad/choke, twitchy/crawling sessation on my legs, and REALLY bad balance and this overall fatigue/weakness. It would eventually improve on its own, but my hands and feet always tended to get numb. The last time I ended up with a permanent swallowing issue but it was livable.

Anyway... I was having trouble getting hurt (mostly my ankle and hips). I finally had this worse sense of control of my legs and balance went out. I ended up totally destoying an ankle and had 2 surgeries this past year.. My balance was the worst it has ever been, all the other things have also hit hard plus I get some pretty bad headaches. It just wouldn't go away this time. I am very frustrated that it isn't just some passing thing that would eventually go away in a week or so. It has been 14 months with no improvement at all. I am in 2 jointed AFO's and have to use cuff crutches just to get from point A to B. Have been in PT for a good while but legs are atrophying and I have no real improvement. I do get floppy-er if I stop going. My balance is like a drunk man and it is really embarrassing. I am over it if you know what I mean.

My surgeon was investigating things and talking with his partners. My foot nerve test showed "slowing" - ironically starting well above my injured area and this had nothing to do with my ankle. He was concerned nobody ever put all these things together. He asked all sorts of questions like did I have to pee often or leak (yes, which is worse than ever before even tho I have been on Detrol for a few years), bowels (now usually constipated), tolerance to heat (it knocks the snot out of me and I can't handle it at all), swallowing (now pretty bad. I was diagnosed a few years ago with dyspahasia secondary to esophageal dysmotility), and all sorts of other stuff.
He feels I have a neuromuscular problem and that that is what let me injure the ankle so badlyy. He and his partners think I prob have MS that is relapsing remitting that has progressed or Myasthenia Gravis. There is a chance it may be Limb Gircle MD but he feels all the autoimmune issues I have (thyroid, psoriasis, labyrynthitis, etc are all connected). They are flabergasted that I never complained about it before or that my PCP never picked up on the fact that the symptoms could be connected (he called the symptoms a falre or relapse).I feel like I might have fallen thru the PCP's cracks.

Saw my PCP today. Now off to get a MRI of my head Saturday and will see a neuro Monday. Boy things are moving fast... is this normal?
I am a bit overwhelmed right now and a bit afraid that I might actually be "stuck" with this balance, weakness thing. I am also NOT wanting some disorder that they can't fix. Being handed a permanent parking pass seemed to make it really hit home for me that this may last a good while.

OK, so I sound like a fruitcake. Sorry, this is all just a bit scay to contemplate. Sorry also that I have rambled. -
jane





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