Ok, when I was 22, my left leg went numbish. After exhaustive MRIs and what not, they decided I had Transverse Myelitis. This went unchanged for almost a decade.
Then, suddenly one afternoon, the right leg decided it wanted to follow suit. Well crap... More of the same... They said now I basically had MS. I did a spinal tap and it showed two pairs of whatever... I still had most all motor functions but everything felt 'off'...
Now, July 09, Suddenly feet are on FIRE. Literally. They feel like they are completely numb and yet on fire at the same time. This moves up past the belly button to the top of the stomach. Feet also start to swell, turn red/white on and off. This is so painful that I can no longer wear shoes. Balance is now becoming a minor issue and I use my cane 100% of the time.
More MRIs ensue, no new lesions to account for new problems. No brain fingers for MS ever yet detected... Nothing. Multiple neurologists start drawing a blank. I call one once asking of having my old silver fillings removed could have done something, as this last rash beginning with the right leg joining the party started immediately following (within a month). And mercury issues literally line-up the list of just about everything I have... He basically said he didn't know but would order some tests.
24-hour urine test came back negative (as expected for chronic poisoning). But the following 6-hour invasive (following DMSA ) test came back with 0.22 (what ever units they measured it with) and labeled that as very high. Neruo suggests I see some specialists to figure out what to do.
Specialist #1 (Feb 2010) charges me well over a grand (no insurance for this stuff) and ends up giving me a test with EDTA (not recommended for Mercury...) A week following, all of the burning problems have moved into my right arm also. Mild to begin with but now (April) it's even worse than the feet. Being a computer programmer, my job is very much in jeopardy.
My neuro recommends I cut this guy off and try another one. Next one is even worse. She tries to argue that there's no way they could diagnose MS with MRIs and Spinal Taps... And that only the 24-hour mercury test matters. Then spends an hour trying to argue that I should give up meat all together save maybe one day a month... More $ gone...
Yesterday I noticed the burning/numb feeling now moving up my right cheek up to and including my ear. Under my eye feels normal but only just. Left side of face feels fine. So does left arm down to my belly button roughly.
My neuro does not have any more clues... Nor do any of my others or my other doctors... Basically, right now I'm getting ready to plan my final arrangements... I just turned 35 and don't know if I'll see 36... Figures since I just got remarried and found true and honest love... (unlike my first marriage).
The only other thing my neuro suggests is a plasmapheresis... But that's a $50k+ procedure which insurance laughs at... And I don't make even enough to remotely consider it...
So besides stem cells, we're looking into mercury poisoning, and any other possible conditions that I might have. Problem is right now we're coming up empty...
My Symptoms List:
Numbness in legs, feet, right arm and hand, right side of face.
Extreme burning sensation (of being literally on fire) in the same above locations.
Occasional visual swelling and discoloration (red/white) in above locations.
Double-Vision that sets in with fatigue or gradually throughout the day.
Vision focus problem. (Hard to read or even watch TV with a constant steady gaze. Eyes wander.)
]Coordination/Balance issues. Falling down, clumsily walking. (Even clapping is a problem. I hit my wrist more than my palm. Doing arm-out, close-eye, touch your nose tests, I hit my lip, eye, or touch the nose with the hand or middle of the finger as much if not more often than my finger tip (never failed that one before))
Weakness (I have trouble opening a ziplock bag. Grabbing both sides with my finger tips for one hurts the right hand like you wouldn't believe. But pulling them apart, they might as well be superglued. This comes and goes a bit but I have NEVER been 'normal' in this respect over the last several months.).
Difficulty releasing bladder (Prostate checked out just peachy).
Slow muscle movements (Even though I can still feel the burning hand, moving it feels as if through thick syrup or something. To make a fist, then open it, repeat, feels like I'm doing it with my hand buried deep in sand. (Make sense?))
Other things of note, but likely related just to the stress of this situation:
More migraines (2-4/month, up from 5-10/year historically)
No appetite (but a sweet-tooth from heck!)
This is a repost from my Save-A-Zombie Foundation forum. You can find more information on me there if I left something out.
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