He said that he himself got bfs in med school and was convinced that he would be in a wheelchair hooked to a respirator on his graduation because he too was convinced he had als. Now after 30+ years he just has learned to ignore his twitches and is actually amused by them. He told me I would learn to ignore them which is easier said than done but it took him over two years so it is a process. He than did a thorough clinical and discovered no weakness or atrophy, good reflexes and no spacisity. He concluded by doing an emg on my calves and shins which he picked up some fasiculations on and one in the tricep muscle and at my request one in my lip. I had asked him to do my lip because of the facial twitches and he said if I had bulbar he would have known it the second I walked in and facial twitches are very normal for BFS. All were normal as he showed me the screen and explained what motor neuron disease would look like and I did not have any signs of it and after 16 months I would not develop anything from this in the future. I asked him if BFS ever turns into ALS and he said never and quoted the Mayo clinic study indicating the same. When I asked him the difference between the twitching and the sensory symptoms he said they are both caused by hyperactive nerves. The sensory nerves caused the sensory symptoms and the motor nerves caused the twitching.
For those who have experienced what seems to be clonus meaning when they put their foot up on something it bounces he said that everyone has that to some degree himself included and it is really more of a tremor or a pseudo-clonus. He said it all depended to what degree your nerves were excited. With him all it took was an extra cup of coffee to get his to do it. He also said a little clonus in some people is actually normal. He also told me wide spread twitching proved it was nothing sinister because als does not ever present that way. The more wide spread the more likely it was to be benign. He also said als starts out with weakness not twitching and he was the one who usually had to call attention to his patients twitching as they had not noticed it themselves.
Unfortunately there were no new meds he wanted to suggest and that klonopin was one of the better ones for this as he felt that the other anti seizure meds were not necessary in my case. He also felt that eventually I would not need anything because I would move past this and not care anymore. It was a long day and six hours of driving but well worth it for the peace of mind and knowledge this Neurologist was able to give me. He even gave me his card and email in case I had any questions. I am so grateful that he was able to give me the all clear and am sure it will be my best Christmas gift of all. I hope some of what I have written here helps those on the board still in doubt that BFS does exist and can be conquered because today I was convinced that it totally can.
Merry Christmas
Mary
Thanks again for posting!
