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In Remembrance
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Join Date: Aug 2006
Posts: 1,002
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In Remembrance
Join Date: Aug 2006
Posts: 1,002
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To Try to Gather Information
Along with the discussion on CDC and OSHA, I'd like to know WHY no doctor has gathered ALL of the TOSers in So CAl and done a sort of question and answer, and gather the answers, and write some sort of article on us. I mean, if we are that rare, then doesn't it make sense to go to where there is a glut of us (and there does seem to be a LOT in CA) and get some basic, common, facts about TOSers and stop the arguing that the medical community does sometimes about some of our more obscure symptoms. Like, we all get face pain - wait, I shouldn't say "all" because I don't know that - but in our groups, we talk about face pain, jaw pain, someone pull up our long list of symptoms (not the Top 5.) And we call it the Top 5 because there are some basic symptoms we ALL seem to have, and then those additional symptoms that many share and are identical, such as the twitching fingers on occasion. Or the RSD that so many of us develop.
Whenever I read those Net Med line things, I always find so much misinformation or failure to truly identify the pain and disability of neuro TOS. And it's not like I'm well enough to do this fight - I get so tired out after talking to CDC for an hour, or OSHA for an hour, getting nothing, and even the people I'm talking to are saying, "I don't know why we don't have stats on that, you're right." So let's talk to our docs out here in CA and see if any would be interested in doing an article using all of us that / who would volunteer. Maybe we could even start a list of questions ourselves, and put it into a first initial with number format, for privacy, and then start answering these in either a polling type method, or just a descriptive answer to each question...
What does anyone else think? I can think of some questions already, such as how many days does your TOS keep you from washing your hair, or engaging in walking or sports, and, are you diagnosed - how many doctors did it take to get a diagnosis, what tests did you have to take before you got a definitive diagnosis, what other illnesses came after the TOS? Describe RSD if you have it. I mean, wouldn't you all be interested to hear what people respond? And it's not a right or wrong answer - these are our true stories, our truth .
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