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Sylvie33

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About Sylvie33

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  1. A concern about Mestinon is that some people do not have the gene to metabolize it and it then causes acute neurological symptoms.... including peripheral neuropathy. All American service people serving in the Middle East were given this drug prophylactically to guard against nerve damage from toxins. All 100,000+ victims of Gulf War Disease were found to lack the gene, where no veterans with this gene had GWD! Took decades of research with a concerted infusion of funds to determine this. So, be cautious. Also think about what a similar effort might do for the understanding and tre
  2. Dear Dancer,

    I just read what you wrote about heat issues at night.  I just bought a pedestal fan...Lasky 2535.  It was inexpensive and it shows (all plastic)...but it is wonderful.  It's unobtrusive,  no propeller, very quiet..with good settings and it has a timer. Adjustable head ... I put it at my neck and aim it at my own body. It really has helped!

    Sylvie 

  3. Robin.... Sickness behavior is what healthy people feel when they have the flu...exhausted, seeking to stay in bed, etc. It is also common in autoimmune illnesses...like sarcoidosis, lupus MS, etc. AND it is found with dysautonomia! It also is typical of CFS and fibromyalgia....which is why researchers are looking at the role of cytokines 8n these disorders. I'm really not very clear about the workings of cytokines, so if someone more scientific is reading this please chime in.
  4. Dr. Julian Stewart, a pediatric cardiologist who researches these things, writes about a number of different cytokines ---endogenous inflammatory markers ---associated with dysautonomia. Cytokines are also implicated in "sickness behavior," which is my biggest dysautonomic problem, and also in depression.... So apparently there is something inflammatory going on with us....they just have no idea precisely what or why yet. Just a bit of an issue that many antibiotics also cause neuropathy!
  5. I second MtoG. With our odd methodologies and symptoms, we are hard to diagnose and treat and easy prey....just having someone listen to all symptoms is alluring (I had a list of 23 last summer...just a tad shorter now).
  6. Dear ks42. You have a very convincing case study, and you are very level-headed about this (especially given the clamor on the web, which may be deserved...). My (pretty severe) dysautonomia was apparently caused by drug toxicity (antidepressants) and subsequent abrupt withdrawal --- even my big cheese dysautonomia specialist thinks this is the case. This is next to nothing in the literature addressing this either. A lot of the research on neurotoxicity of environmental factors and drugs is in its infancy. Consensus is out there that research funding is limited because of liability issues
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