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My mysterious 10 year journey! Yeah me!

Posted 09-10-2011 05:41 PM by Eyeball gal

My symptoms

Ok so here's a somewhat short version list of symptoms that one neurologist, one neuro-Opthamologist, one Opthamologist, one family doc and a bunch of assorted ER docs have not figured out what's been going on for the past 9yrs so here it goes
-radiating eyeball pain, in one eye! But switches to opposite eye on occasion, pain is a #9 and it never goes away, large doses of anvil curb it to a point, these episodes over the years have progressively gotten worst! Some lasting a month to 4 months but the latest episode going on a year now!

-DOUBLE VISION, started 9ys ago, always present but in my peripheral visual field, but this last year in a half I wake up in the morning with the double vision in my central vision with my eyes visually looking cross-eyed, this lasts for about 4 hours then goes back to being in my peripheral

-EYE/FACE SWELLING, started two years ago, upon wake up my face and eyes appear very swollen, this happens occasionally but not every day

-VISION DISTURBANCES, since mar of 2010 a dark translucent disc shape object appeared in my vision, there not floaters and they're not blind spots! Because I can see thru them! The 1st ones are at the twelve o'clock in both eyes and the new ones that just appeared are at the 3 o'clock, I also occasionally have light bursts in the peripheral part of my vision

-BLURRY VISION, sometimes I get the dirty window effect over my eyes, have to blink fast clear it

-DRY EYES, ecspecially at night, feels scratchy and gritty

-DROOPY EYELID, been there for 9 yrs usually one eyes affected, and sometimes will suddenly change eyes

-EYES DON'T TRACK TOGETHER, started almost two years ago, some days it's more noticeable than others, always one eye that doesn't quite turn all the way in or outward

-NECK SHOCKS, this started a year ago, if I turn my head in a certain direction I get a painful shock down my neck and down my back

- DIZZINESS/VERTIGO, started dec 2010, when I patch the right eye I immediately feel the urge to fall backwards, I feel really dizzy in the shower or in extreme heat, even washing dishes, when I'm running around doing alot at once I get a feeling of the floor rising up and down, when getting off escalators it still feels like I'm still riding the escalator

-EAR SENSATIONS, I get a high pitch ring in my ears especially at night, and ear quivers, brain shocks while sleeping as well

-PINS AND NEEDLES, this comes and goes, the most noticeable is on the back of my neck and all the way across my upper back, other places are from my shoulder to my hands, as well as down my legs

-NUMBNESS, I get it in my upper back, down shoulders, in hand and fingers, when it's really cold I get that in my fingers and toes, just by being in a cool house

-BALANCE ISSUES, have to lean against something while putting on my pants and socks, I bump into walls all the time, and have problems going through doors, never had these issues a year ago

-OVERHEATING, at night my arms and legs feel really, and have low grade fevers too, if I over exert myself I feel so flushed I feel really dizzy

-SPASMS, anytime I over do it, in my legs and arms

-MUSCLE STRENGTH/FATIGUE, any climbing of stairs or up hills, my legs start to burn and get really weak, I've even collapsed at the top of the stairs, cannot hold heavy objects I end up dropping them, can't paint with a paint brush, can't carry a pot with one hand need to use two hands

-MUSCLE JERKS/TWITCHES/TREMORS, this started a year ago, happens through out the day,†

-SPEECH, 6m ago I noticed my voice is constantly changing from normal to horse sounding, my voice strains easily, and I always have the sensation of something stuck in my throat

-HEARTBURN, started a year ago, happen off an on and doesn't matter what I've eaten

-BREATHING, this started 6m ago, I get short of breath very easily

-BOWEL SPASMS/BLOATING, since bowel surgery, probably due to chrones

-BOWEL LEAKAGE, since bowel surgery, probably due to the chrones

-URINARY ISSUES, just started recently dribbling on occasion, and needing to pee often then normal

Well that's that for symptoms, things have been thrown around from me having myasthenia gravis due to a positive tensilon test 8 yrs ago, but ach blood test was normal so nothing ever came out after that, then they said maybe MS, but brain MRI was clean, exept they found a orbital pseudotumor which didn't show up on the original MRI, so no lesions means no MS, but no one has done an MRI of my spine so MS is still on the table until they can rule it out! Same goes for the MG! so as of right now I'm in limbo land very frustrating waiting, been out of work for a year because of some of the symptoms especially the eyes, now I've been waiting to get in to a MS doc but that's been 6m since being referred, so I'm here waiting and waiting while everything continues to progressively get worst!†
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