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Neuro Visit Notes

PostPosted: December 5th, 2005, 10:19 pm
by Taylor
Hi Everyone,

I had a little free time tonight to post this. I don't come to this website anymore because I have found I need to keep my mind off of my twitching which reduces my anxiety greatly. I have been to three neurologists since I started twitching nearly 7 months ago. The last neuro I saw was last month in St. Louis, Missouri at Washington University's neuromusclar clinic associated with Barnes/Jewish Hospital. My visit was with one of the associate directors of the clinic and the director of the electrodiagnostic lab. He is an associate professor of neurology at Washington University and here are some of the main points that I remember from my visit.

One of the first questions that he asked me was whether I could feel my fasiculations. He stated most people with ALS do not feel the fasiculations and the doctor is the person who sees the fasiculations for the first time.

He told me that in 95% of all cases of ALS weakness is the first presenting symptom.

He said that in 70% of people with benign fasiculations there was a prior viral infection. (I had read a number of 30% in the past so this fact surprised me.)

He said that benign fasiculations can last a long time then suddenly stop for awhile and come back again.

He said there are 4 medications to control the fasiculations if they are bothersome but they are no better than taking something like tylenol for a headache because they do not stop the underlying cause but only mask the symptom.

Those are the main points I remember from my appointment. Hopefully all of us will continue to be o.k.. After I had my first EMG I made a donation for ALS research and just received another request for a donation in the mail today. I will be sending another donation tomorrow. If anyone is interested donations can be sent to ALS Therapy Development Foundation, 215 First Street, Cambridge,MA 02142. According to the information that I received from ALSTDF, their mission is to seek out, arrest, and cure ALS. They do this by identifying and filling gaps in the development process and defining and delivering the resources required to transform ideas into concrete therapies available to patients today. Their website is http://www.als.net

Thanks,

Taylor