Discussions By Condition: Medical Stories

Numb & severe burning sensations + weak/tired/clumbsy/vision/etc.

Posted In: Medical Stories 3 Replies
  • Posted By: SirGCal
  • April 27, 2010
  • 03:46 PM

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:

Very irritable
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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3 Replies:

  • The burning sensation sounds a lot like a vascular condition (peripheral vascular disease). In this case, the blood vessels become narrowed and blood flow is restricted. This vascular condition usually affects the legs, but can also be found in the arms. In this case, the burning sensation may be accompanied by a blood pressure increase, swollen feet, blue lips and thick nails.Other things that I've found:> Herpes, a sexually transmitted infection, is also known for causing a burning sensation. Both herpes simplex and herpes zoster are known for causing a burning sensation, along with a host of other conditions. Herpes simplex is often accompanied by pain or lumps in the genital area, swollen lymph nodes and a stinging sensation in the skin. Herpes zoster often also leads to a burning abdominal pain, loss of hearing in one ear, headaches and the inability to move the eyes. Both can produce open lesions and sores. > Problems with the nervous system may cause a burning sensation in the body. Nerves that relay messages and are connected to the spinal cord and brain can be damaged in a condition called peripheral neuropathy. It often causes a burning along with loss of muscle control, lack of sensations and pain. In other cases, a particular nerve is affected, in a condition called neuralgia. Other symptoms of neuralgia can include tender skin, numb feet, loss or lack of motor skills and paresthesias, or abnormal sensationsHope this helps! If you have any more questions or concerns just ask.
    Twinbird24 24 Replies Flag this Response
  • Unfortunately no. Been tested for Herpes et. all. Negative.Had full ultrasound to test bloodflow in burning extremities, my blood pressure is, for lack of a better term, perfect. That's what they thought it might have been also...And, believe it or not, I went through a full, very painful peripheral neuropathy test with the electro shock test and a very sadistic nurse. That one came up clean also...Right now they put me on Oxycodone which helps with the pain but has MANY problems of its own. Still doesn't tell us what's up. Still suspecting Mercury as most likely candidate simply cause we've exhausted everything we can think of. Also have a B12 test in progress.Considering trip crossed country to Mayo Clinic since my neurologist is literally out of options and possibilities. I had a bunch of that information in the last post but the links were removed so I can't help with that. Thanks for trying though.Right now, it feels like my palm is sun-burnt to a crisp. Opening a water bottle or just opening the mail is pure agonizing torture. Even with the Oxy... I also have a very high tolerance for pain. I've had a dozen stitches without Novocaine. I hate Novocaine and the pain just doesn't hurt me that way. It's just a needle... Anyhow, I can take that pain all day, and in tender areas (Had four stitches under my eye once when I had an accident and cracked my head open. Refused Novocaine then too.). But this burning... This burning is unique and OMG soooo painful... And if I can't stand it with my high pain tolerance, I couldn't imagine a 'normal' person with whatever the heck this is...
    SirGCal 3 Replies Flag this Response
  • Well, you'll have to wait for the B12 test results. Mercury could be the problem. It may be fibromyalgia or peripheral neuropathy (which can be caused by heavy metals such as mercury).
    Twinbird24 24 Replies Flag this Response
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