bfhopeful2
Well-known member
I had a follow up neuro appointment today and he said some things that have been said here a few times over again, but I thought it was worth reiterating. I was afraid that I had been given the EMG too early. He actually demonstrated on a diagram why this would not be the case. See when you get fasiculations from disease that means that the nerves to your muscles have already started to die. You have a nerve that goes to each part of the muscle and as one connection dies another nerve will pick up it's place. As time goes on you have a small amount of nerves running multiple muscle fibers. The fasiculations come from that transfer of nerves to new muscles. Sooner or later there are no more and the muscle itself dies and no longer functions. So if you have fasiculations and you get an EMG then there would be signs of this going on. That does not necessarily mean ALS, but in the absence of any abnormal findings it means you don't have anything serious.He also said that generally speaking any basic neurological exam would be able to pick something up. He also ran multiple blood tests on me ranging from hepatitis, vitamin B to CPK levels and all sorts of things that came back perfectly fine. Another indicator that something is wrong, not necessarily ALS is a high CPK level. If the CPK level comes back normal then again there is no tissue damage. You can have high CPK levels for many reasons, but if it is in normal range it further discounts the possibility of having anything serious.He also said that BFS is much more common then ALS and he sees many more patients with BFS then ALS on a regular basis. He is not an ALS specialist, but does have patients with the disease and he said that it is pretty easy to pick up. So if you have been cleared then the chances of it coming out at a later date is remote to say the least.I forgot to mention that he is a neurologist and a psychiatrist so he sees things from both perspectives. His take on it is that when your body is under a lot of stress, especially when control is being taken away from you, divorce, business, etc. then it starts to effect you psychologically. One way the brain compensates for this is to give you physical symptoms that you concentrate on almost as a defense mechanism. This is usually the case when people that have high anxiety think they are sick and go from doctor to doctor for a diagnosis, but can never find one. So in my case anyways he thinks I fixated on these symptoms to get away from the other things in my life I have no control over. I know BFS is different for everyone and I am not saying that there is no underlying reason for the symptoms. I just know that anxiety and stress make them much worse. And what more stress can you have then thinking you might be dying. It’s like believing you have a bomb strapped to your body and at any point in time it could go off. That is definitely no way to live. I truly believe that the only way I am going to get healthy is to stop obsessing and just let it be. The endless internet searches get me know where except for a trip down panic lane. And once I’m in the neighborhood it’s hard to find my way out. I am going to take a break from the internet and try to get healthy. And I don’t mean rid of the twitches, just mentally healthy. I need to start living life again. For me, my kids and everyone else that counts on me. This board has been great and I will be back, but for now I am not strong enough to help others. Being here is just a daily reminder of what I am trying to get away from. Thank you so much for being there for me, seriously. Especially Kit, Amy, Mario and Ed. I will be available via PM for anyone that has a specific question, or just wants to say hi. And for those that I have become friends with and have my number don’t hesitate to call. I just can’t read the posts anymore. Each time I do I start doubting my own diagnosis again and since accepting is the real first step I need to take the time to really do that. Good luck everyone and I hope that each of you find the peace of mind you need to get past this.Remember it’s not the fasiculations that are the problem. It’s the anxiety, obsessing and belief that it is more sinister then it really is that effects our lives.