Discussions By Condition: I cannot get a diagnosis.

34 year old misdiagnosis and time is running out!

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: JDP of Ok
  • December 25, 2006
  • 07:51 AM

I am 34 years old and I have been in pain and had strange sensations since my first memory. I was able to work for the first years of my adult life but it was always difficult. Now, to work is out of the question. I was told by my mother that my head was dark blue to black when I was born (Hypoxia). I don't know how severe it was but I had seizures for the first few years of my life. My mother said that I would stiffen out and bite my tounge. The doctors did an EEG and found no problems. They also did a splint of my mouth to see if my tounge was too big, which sounds kind of stupid now. Eventually the seizures turned into what was thought to be night terrors. When I was 7 years old the heater in our house malfunctioned and my whole family was poisoned by carbon monoxide. I don't know how bad it was but I felt numb and intoxicated and couldn't stay awake. My older brother was having convultions and mom, dad and younger brother all had headaches and nausia(as far as I can remember). Every since then I have felt messed up. My early memories are backed up by what my mom told me but the exact time is unclear and my symtoms stacked up on me over time. At first my bones ached, had muscle spasms, seizures, insomnia, sleep paralsys and attention problems. About the time of the carbon monoxide poisoning my eyesight started doing strange things. It looks like the words are floating above the page I was reading. I also see black cloudy splotches everywhere, bad enough to not be for sure if there were clouds in the sky and I can't focus my eyes. My body temprature is cold or hot but rarely normal, I itch for no reason and some times all over and on the severe side. My skin sometimes feels like I have a bad sunburn in various areas most of the time. I constantly feel about half drunk. Very often I feel like I am having muscle spasms in my chest and can see my chest jump once to a few times per second, I am depressed and have anxiety problems and the chest spasms are not from anxiety. My body twiches and jerks at any given time, I have been told that I can at times act bullit proof and words fly out of my mouth that can cause alot of trouble. And then I go to the other side and get depressed and antisocial. And with the mood problems I sometimes feel like everything is good and I smell chemicals. AND, I have been diagnosed with poly neuropathy, but the rest of the stuff the doctors can't figure out (I think it's brain damage from the hypoxia and carbon monoxide poisoning but they tested everything else but). I can't get them to look into brain damage for reasons I don't know. I have had the folowing test; 2 EEGs, Lupus, MS, complete Thyroid test w/vid. D, sleep study, heavy metals, AIDS and VD, and some nerve test in my arms and legs. My time is running out for legal reasons and social security court appeal is near, and if I can't prove I am sick I will lose my freedom (child support). Who ever knows what this problem is, please help me escape from this ***l on earth! I have no money and very little personal belongings left, so further medical help can't be paid for. I have lost everything while looking for a name for this illness. Please Help Me

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2 Replies:

  • I am wondering if you have ever been tested for porphyria? Porphyria causes symptoms varying from seizures,spasms,mood disorders(including the ones you seem to be experiencing)insomnia,restless leg syndrome,skin conditions,neuropathy,and chemical sensitivity...among many others.The condition can be brought on by exposure to chemicals,anesthesia or even medications.I am not a medical dr and while there may be other causes for your symptoms, I would strongly advise you to look into this condition.It is very difficult to diagnose as tests often show false negative results.An excellent source of information can be found at the porphyria group found on yahoo groups...if you would like to email me I will give you the exact site as I will have to look it up.There are other sources of information but many are very vague and not much help at all. I hope this has been of help and I wish you the very best!!! Please drop me an email if this has been at all helpful:) Shelbie_672@yahoo.com
    Anonymous 42,789 Replies
    • December 25, 2006
    • 09:07 PM
    • 0
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  • My email address has an underscore after shelbie which is hidden.It should read shelbie_(underscore)672@yahoo.com Take care!! :)
    Anonymous 42,789 Replies
    • December 25, 2006
    • 09:12 PM
    • 0
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