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 July 14, 2008, 08:41:49 PM
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Posts: 151
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Thanks for your post, Samantha. I've had CT and MRI scans, an EEG, and other tests I can't remember over the years, and no test reveals anything. Doctors think that proves no problem is there, no matter what the patient says. It really means that you just haven't found the cause yet, for whatever unknown reason. We can't test for everything. We may not have the right test yet, and you have to choose something specific to test for, and clearly no doctor has thought of the right thing to test for in my case.
I started to try to find my own information and think for myself on all this, as soon as I figured out that doctors weren't even paying attention. The severe eye and memory and concentration impairments made this next to impossible. All these years later, I still haven't been able to start seriously pursuing my own answers. My hands are tied behind my back.
My entire family is dismissive and disgusted with me, and when I finally managed to get away from family in 1999, for my own survival as a person, I made sure not to contact any of them ever again. I still have nightmares about struggling to be believed when I was dependent on them, had no money, nowhere to go, and couldn't step outside or open the window blinds without my nervous system (etc) coming under attack.
People don't understand that level of sensitivity. I don't think people try to understand it.
I have a couple and their daughter who are friends, and I couldn't have gotten by without help from them. I know two or three people to some extent online. Mostly I have to isolate myself, for physical reasons, and because I can't communicate well spontaneously... whereas on message boards I can take my time and edit, and not post when this "blankness" of mine takes over.
PS-- I talk about EI (MCS) as a part of my condition (I try to explain it a bit in the "Resources" section), but that doesn't mean I'm not an undiagnosed patient. EI is only part of what's happening to me, and there's a more fundamental eye and neurological problem underlying the EI that has no name and no diagnosis. Besides, they don't know what causes EI, so it's more of a convenient label for a certain class of reactions or symptoms, than a "disease" with a known cause. I'm not sure if that made sense.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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July 17, 2008, 08:54:38 PM
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Group: Administrator
VIP Member
Gender: 
Posts: 920
I Will Be Diagnosed !
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Jason.....
From what you have posted regarding your EI:
convenient label for a certain class of reactions or symptoms, than a "disease" with a known cause.
This happens so often in the medical profession, when I was diagnosed with Neuropathic Pain it's the same :
"disease without a known cause"
they say it's caused from mixed signals from the spinal cord.......... :P
But (my personal opinion anyway) will wait out my neurosurgeon appointment.. I believe there is a reason for my Neurpathic Pain, the specialists just can't be bothered looking.
Same for you, doctor's just can't be bothered.
As I have said to many time and time again:
Unless you go through something like this yourself NO ONE understands.
I cannot imagine how you feel, only relate to the undiagnosed bit...
I have tried and imagine it to be like:
When you have the worst migraine ever, and you need to turn all the lights out and wait for it to pass, only for you it never passes, and that would be a complete nightmare and the pain excruciating.
I cannot comprehend how your day to day life is, but just know you are always in my thoughts :)
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July 20, 2008, 05:18:35 AM
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Posts: 151
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convenient label for a certain class of reactions or symptoms, than a "disease" with a known cause.
Thanks very much, Samantha. Actually, in the case of that one part you highlighted, I just meant that my saying I have EI doesn't mean I have a diagnosis, because the term is really a way to refer to a set of symptoms, with the causes or mechanism still unknown. For me, a "diagnosis" would be something more than that. Besides, EI is only part of what I have, and there's a totally undiagnosed neurological problem causing the EI in my case, there has to be.
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"You're better than normal! You're ABnormal!"-- Fry to Leela, who's self-conscious about her single eye, Futurama
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July 22, 2008, 11:39:39 PM
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Group: Administrator
VIP Member
Gender:
Posts: 920
I Will Be Diagnosed !
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Thats very true in alot of cases: " term is really a way to refer to a set of symptoms" Everything new happening to me is put down to that, just another symptom of whatever is wrong with me :'( convenient label for a certain class of reactions or symptoms, than a "disease" with a known cause.
Thanks very much, Samantha. Actually, in the case of that one part you highlighted, I just meant that my saying I have EI doesn't mean I have a diagnosis, because the term is really a way to refer to a set of symptoms, with the causes or mechanism still unknown. For me, a "diagnosis" would be something more than that. Besides, EI is only part of what I have, and there's a totally undiagnosed neurological problem causing the EI in my case, there has to be.
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