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Brain & Nervous System Disorders Message Board

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I am new to these boards and I hope I can find others that can give me some advice.

A bit about me - up until recently I was in good health. I am a 44 white female, mild migraine sufferer (6-8 a year when hormones and barometer collide). I typically saw my md once every couple of years for a physical and only for the odd drop in if I needed to renew a prescription for sinus medication (nasonex) to keep me clear when I had a cold. I am not a medicator - I get high on an aspirin and I only take one advil for migraine if its really bad. (to give you a clue - typically meds expire in my cupboard). So the world of medicine and drs is new to me.

[U]So here's my story - [/U]
I flew on business in mid July 08. After return flight on the friday, I noticed my left foot was swollen (ankle was 2x its size). By Monday it was not as swollen but it hurt to walk (ball of the foot was really sore and "burning" and top of foot near the smaller toes looked bruised). I went to my md and we both figured I over did high heels or the plane ride caused something. It went away after about a week with ice and elevation. (not sure if this is tied to my condition or not my md thinks so)

Fast forward to first week of August, Driving to work my entire left side suddenly "switched off" and I felt numb (think dentist freezing) from top of my head to my toe on the left side. Went to ER thinking stroke, they ran tests, blood CT and ruled out stroke and advised I should follow up with md.
MD was very concerned and did a full physical and work up. All normal.

2nd Monday of August - I get up use the toilet and cant stand - neither leg wanted to move. finally got some feeling (the numbness again) and crawled back to bed. Went to see MD and he referred me to neuroligist with suspicions of MS.

3rd week August - fire so bad on left side I went to ER and was admitted for 1week tested and released.

Numbness has not entirely left me since the first episode - it is always there in varying degrees - at best numb left hand and foot, at worst - all nerves on fire (numb and tingling) from left shoulder down to finger tips, both buttocks, spine from neck to tailbone, and left buttock down to toes. Curiously very few issues on right side - sometimes a dull ache in the shoulder and recently a sharp needle like twinge in the second toe of my right foot. Other symptoms include MAJOR fatigue and sleep interruption, increased peripheral neuropathy with any activity (even a shower can trigger sypmtoms), general lack of energy, weakness on left side on really bad days, migraines are up to 1 - 2 a week and far more intense than usual.

I have had the following tests:
[B]CT - [/B]two no dye (one was supposed to be with dye but technicians screwed up) both normal
[B]MRI[/B] of head and neck - both normal (although the brain showed "[I]8-10 tiny foci of hyperintensity in the T2 and FLAIR sequences involving deep white matter in both frontal lobes[/I]"
[B]VEP [/B]- results pending
[B]EMG[/B] - test pending (scheduled for Nov 13 - gotta love CDN medicare)

Today I went for Lumbar Puncture and Neurologist put me through torture! 6 attempts with the needle (and I felt everything) he hit bone and nerves several times. I was screaming - I could feel EVERYTHING!!!! Never felt that much pain in any procedure. I've had gall bladder disease and those attacks were a cakewalk compared to this. He never managed to hit the area for the fluid so we aborted and he said "your back just isnt suited to this". He's ordered another LP under the xray and I am hoping this one will go better - I know it needs to be done to get a diagnosis but needless to say I am hoping they get in there without me feeling anything next time. Should it hurt like that? Everything I read was "slight pressure". Not burning honking pain!

So here I sit - wondering what the heck this is and how long it will be before I either have knowledge and a plan or begin to recover. I am at my wits end and starting to think I am losing my mind. This is all so surreal and I feel so useless and helpless. I havent been to work since Aug 25th. I hate feeling like this. It's all so upsetting. I try to keep a brave face for family and friends - especially DH. I don't want them to pity me and I see the fright in their eyes when they ask me how I am. I hate saying -"about the same with good and bad days". This is a new kind of hell. I try to rationalize myself out of pity parties by telling myself - you're not in a wheelchair, you're not incontinent, your vision and hearing is ok, you're not demented - it could be so much worse, but at times, especially like right now when I can find a comfortable position ( and my back is throbbing from that *&#!% LP attempt) and all seems so endless and unknown with no light at the end of the tunnel, it's so hard to keep a brave face.

Thanks for letting me vent. If anyone out there knows what this could possibly be or is going through the same thing - it helps me to share.

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