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tonyk
04-08-2009, 02:15 PM
Hello, for three years after a head on collision I have had the following symptoms requiring emergency room visits on a couple of occasions. I was under the belief it was due to heat, but know I am convinced it is bright sunlight.
After being outside in bright sunlight, first symptoms are double & blurred vision and it feels like something is crawling up my legs. If I do not move directly out of the sun I get more symptoms; temp hearing loss, severe confusion, profuse sweating, extreme fatigue, left hand tremor, multiple muscle spasms, sharp/shooting pains that are as quick as a shock, slow/slurred speech/mixing words, numb lower jaw/chin, nausea, aggression. symptoms have lasted up to a week after prolonged exposure/severe event- 30 min exposure. One of my knees got painfully stiff & I could barely walk. I have also gotten swollen painful lymphnodes on my upper thigh/groin on one ocassion (could barely walk). rashes on my collar bone, other areas of the body.
In 1996 I was diagnosed with meningitis & probable Devic syndrome (optic neuritis & Transverse Myelitis) with something weird happening every 3 years in Mar? dual bicep tendon ruptures in 03. But with no definite diagnosis then or NOW. Docs have given up. Thanks

tonyk
04-08-2009, 02:19 PM
I think it is mostly through the eyes, happens a lot when I don't wear sunglasses. I had a VER which found possible lesions on the anterior optic nerve bilaterally. I am still trying to pin it down whether it is through the eyes or skin. I don't get the sores on the skin.

rob
04-08-2009, 02:42 PM
Hi tonyk,

Welcome to our group. I'm Rob, and I was diagnosed with Systemic Lupus in 2004, and with Multiple Sclerosis last year. Many of your symptoms are fairly typical of Systemic Lupus, but the thing that stands out to me are the symptoms that are very similar to my MS symptoms. You mentioned that you were told that Devic Syndrome was probable. Many people with MS are misdiagnosed at first with Devic. Generally optic neuritis with Devic is bilateral, but with MS it can also be bilateral.

People with Lupus can can have a sudden outbreak of symptoms known as a "flare" from UV exposure. People with MS can have a sudden outbreak due to heat, which oftentimes happens when you are outside in the sun. Some of the symptoms I have from MS are optic neuritis, only in my right eye, confusion, profuse almost unstoppable sweating, tremors in my right hand, numbness and tingling in my face and fingers, those sharp shooting "electric shock" types of pain, muscle spasms, and mixing up my words. I have no tolerance for heat, even a lukewarm bath causes me to have these symptoms.

Have you ever talked to you Dr/neuro or other specialist about the possibility of MS? Have you ever had an MRI to look for lesions in the white matter of the brain? I really hope it's not MS, but it sounds so much like what I've been going through. Lets see what some of our other members here think. I hope we can help you find an answer.

Rob

tonyk
04-08-2009, 03:43 PM
Thanks, I forgot to mention they have never found any lesions, even when I was hospitalized in 1996. I have had probally 6 MRIs and one CT the past 2 years. My labs all come back negative. The docs have said everything fits for MS except I don't have any lesions to confirm it-so no diagnosis. I got the "numbness/pins & needles" in my feet almost all of 2007, I did'nt even like walking half a block. I got hospitaized after a flu shot in 96 and possibly off the flu nasal mist vaccine in 2006. No evidence of optic neuritis when I get examined, just double vision in heat/sunlight. Symptoms have actually lessened after I put on sunglasses?