Survey: Desires for this Board

[Krackersones]

I indicated that I was not going to post here anymore but after seeing similar attacks leveled at another for raising questions, I thought I'd attempt a survey to find out what people want from this board.Please choose the number that best represents your desires or state what your desires are:1. I want this to be a place where those with peripheral nerve symptoms such as twitching/fasciculations and cramps can post about their experiences in seeking information about the causes, treatment, and prognoses for conditions that include these symptoms. I don't want to exclude people that get something other than a firm "BFS" diagnosis because this diagnosis is simply a diagnosis of "I don't know what is causing your symptoms but many people with them don't get any worse." I don't want this to be a place for people with a diagnosis of ALS because obviously there are other sites for this diagnosis and info following such a diagnosis is not helpful to people here who are focused on the many alternative explainations for their symptoms. I want to learn about other known conditions that involve these symptoms and the treatments that are available so that I can prevent possible damage and positively impact my future health. I also want to learn about other non-ALS conditions and others' experiences so I can advocate for myself with my doctors and not be totally dependent on the possibly limited knowledge of the neuro that I happen to be able to see. I recognize that not all neuros have the same level of knowledge and experience and would like to benefit from information that others' get from neuros I can't afford or practically have access to.2. I want this to be a place for those with a BFS diagnosis or for people who haven't yet seen a neuro for a diagnosis. I only want posts that support the general info provided by the founders and BFS in a nutshell. I don't want to know about other non-ALS conditions with peripheral nerve symptoms as there are other boards where these matters can be discussed.Krackersones

 

[papillon58]

hello.. i want whatever ....i hope that people want to learn.. and not always sugarcoat stuff.... i am a fact finding kind of person....i also want people to be able to come on the site when they feel fragile and dont want to read the stuff that is sometimes disturbing ...