I have realized that the best thing I can do regarding learning about my condition, dystonia, is to get out there and perform the research myself. By research I mean attending dystonia seminars, support group meetings such as those provided by the dystonia medical research foundation and networking. Also surfing the internet has been helpful. This weekend I attended an educational seminar regarding dystonia at Yale. Before the seminar I was planning on receiving botox for my lingual dystonia in Asia. I had not been able to find any doctors that had experience with my type of lingual dystonia. My current doctor wanted to experiment and try the botox, but I was not comfortable since they had no experience and the results could be damaging for three months if done wrong. I had communicated with the renowned doctor in Asia and was ready to ask my current doctor for a referral to get the botox injections. My dystonia has progressed to where I cannot eat properly and I have been loosing significant weight. My doctor's response here was "sorry you are going through this, maybe the botox will help even if we are not injecting it into the problem area." This attitude from my doctor concerned me, eating is fundamental to being healthy and functional and this did not seem to concern them. Long story short, at the educational seminar I learned that at Yale there are doctors that have experience with lingual dystonia and with injecting botox into the affected muscles. My doctor who is very close geographically to Yale never mentioned this as an option. I am now learning that it is very important to get out there, communicate, learn and investigate things on my own behalf because, personally, my doctor, will not help me in this regard. In November, I am planning to travel to Washington, DC for another conference regarding movement disorders.
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