Discussions By Condition: I cannot get a diagnosis.


Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: Anonymous
  • April 2, 2009
  • 02:07 AM

I think I have narrowed down the cause. When I am exposed to bright sunlight in warm temperatures I display the following symptoms; double & blurred vision, hearing loss, sharp/shooting pain, multiple muscle spasms, left hand tremor, nausea, slurred/slow speech, mixing of words, numb lower jaw, profuse cold sweating, extreme weakness (especially in legs), lethargic, poor memory,concentration, disoriented, confusion. A couple of days later I had lower back pain and one of my knees got severely stiff/painful where I could barely walk for about a week (no swelling/injury). I continued to have symptoms for 6 days. This is a worst case scenario when I cannot get out of the light and cool off immediately. I can feel it crawling up my legs and double/blurred vision is one of the first signs, it will quickly progress within seconds if I do not take action. I did have a red streak rash the length of my collar bone on one occassion. All MRI, CT, labs come back normal. Only the visual evolked response showed a P100 latency in both eyes without any other evidence of optic neuritis/other eye cond. My docs have refused to administer any further testing because it is not progressive (it goes away). Please help.

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4 Replies:

  • How awful for you! :( Sunlight is associated with something called amyotrophic lateral sclerosis. Ask your doctors if they have considered this: http://www.annals.org/cgi/content/full/120/10/893
    aquila 1263 Replies Flag this Response
  • Have you looked into "Lupus" .. sustemic lupus erthamatosis (SLE) possible wrong spelling! Often sle suffers have weird, unexplained reactions to sunlight.Hope this helps in some way.
    Anonymous 42789 Replies Flag this Response
  • I had the antibody tests, rheumatology, neurology, nothing shows or is consistant with SLE or ALS from what I have seen. The EHS would not surprise me, When I got sick I was continuously around frequency jammers in Iraq, I have improved since returning, other than the sunlight/heat being my worst enemy now. If it is EHS would'nt the other people in the vehicle with me have gotten ill? Thanks for the replies so far. I have never heard of EHS is there a definite test? They would probally lock me up in a padded room if I asked about it. Also, if it was ALS or SLE would'nt it stready progress?
    Anonymous 42789 Replies Flag this Response
  • Thanks, I will investigate the EHS futher. Upon further investigation SLE may have some possibilities. I was hospiatalized & diagnosed with possible Devic syndrome in 96. They never did pin it down. I have had dual bicep tendon ruptures in 03, each arm 6 months apart. erectile dysfunction, bowel & bladder. My ANA/nuclear were normal, only HLA B27 positve, high lipids/cholesterol. I also had a head on collision, so There is the issue of traumatic brain injury, but again my cognitive deficits are mostly present in heat/sunlight and are not constant/consistant with TBI. I have had a lot going on and a lot of it overlaps, so I initially wanted to focus on the sunlight issue or you would be as frustrated as my docs. Is it that the sunlight is absorbed into the skin or through the eyes? I have noted that by putting on sunglasses it alleviates symptoms when they first start.
    Anonymous 42789 Replies Flag this Response
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