Outlook1958
Well-known member
Hello folks!I just had my appointment at the neuro's. It's not ALS... phew. At this point I would like to thank everybody who read my posts and helped me calm down and cheer up a little in the recent time. And of course, thanks to MikePi for maintaining this great discussion platform.For everybody interested, here are the details of my visit at the neuro's.First, an assistent doctor or nurse made and NCV test. This is nothing to be afraid of - it is non-invasive, they just place some electrodes on the surface of the skin of your feet (or maybe other places, depending on your symptoms or hotspots). Then, the device sends some electric impulses throught the electrodes. It is NOT PAINFUL at all, just feels kinda funny. Of course I was nervous and kept on asking things like "Is it normal? What can you see there?". She calmed me down and said that it's all okay.Then the doctor himself came in. He asked me why I'm here, and I told him all details regarding my fasciculations (only in relaxed muscles, cease when using the muscle, throughout the whole body etc). Here is an interesing part of the dialogue
oc: "OK, do you have any concerns about your symptoms and your conditions?"Me: ""Concerns" would be an understatement."Doc: "An understatement? Oh my... what exactly are you afraid of?"Me: "ALS..."Doc: *smiles* "OK, one more. No, no, you can't have THAT. Your problem is your anxiety, as I can clearly see, especially together with all the stuff you already had before your muscle twitching started (high pulse, blood pressure, anxiety, etc)."Me: "Okay..."Doc: "Well then, I'll check you for ALS now, and I hope that after that you'll feel much much better."Then he tested almost every possible part of my body with the small hammer. In the knee it made my leg jerk, in other places like the chest nothing happened. After that he did some strength tests: For example he held my hand and told me to move the fingers in a specific way. I also had to stretch my arms and he tried to press them down a little and stuff like that. Then he touched the sole of my foot (I think this was the test for the Babinski reflex). Finally, he squeezed and pressed some of the muscles in my arms and legs and asked whether I felt pain - I didn't of course.After the tests were done he confirmed that everything is OK with me and diagnosed BFS, caused by anxiety and my way of dealing with all sorts of "strange" symptoms. He said that there are people who panic when they the slightest twitch or jerk or trembling or tickling somewhere, but there also are people who don't really care even when their whole arm is paralyzed. I asked about doing an EMG, wether it was necessary, and he answered that there is absolutely no reason to do it and that it would just be unnecessary pain. OK, I wasn't that keen on doing the EMG anyway, as you can possibly see in my post "How painful is an EMG?".The neuro prescribed me a medicine called "Limptar", containing chinine sulfate (hope I translated this correctly). Interestingly, chinine is a natural product you can find in the bark of certain trees. It is even used in tonic and bitter lemon drinks. The medicine is actually something that helps cramping, but he said that it also helps against twitching. The documentation of the medicine says that it somehow loweres the activation threshold of the muscles. However, I'm going to consult my cardiologist before taking it, because it states that people with certain types of heart rythm problems shouldn't take it. My heartbeat does tend to stumble quite often and I am taking a betablocker because of my blood pressure. If this combination turns out to be somehow suspicious, I won't risk taking the medicine, after all the muscle twitching itself doesn't bother me at all and is not dangerous. I also don't want to be afraid of side effects on my heart. I know that I WILL feel them if I take the medicine, even if they actually aren't there. This might however be interesting for all of you who have cramps and pain in addition to muscle twitching and want to get rid of it. BUT: DO NOT JUST BUY MEDICINE WITH CHININE AND TAKE IT (AS OF ALL MEDICINE ANYWAY). TELL YOUR NEURO ABOUT IT AND ASK HIM WETHER IT MAKES SENSE IN YOUR SPECIFIC CASE. BE VERY CAREFUL WITH THIS STUFF IF YOU HAVE HEART PROBLEMS OR IF YOU ARE CURRENTLY TAKING MEDICINE THAT HAS INFLUENCE ON YOUR HEART.He also recommended me something called "Jacobson's Progressive Relaxation Technique". I haven't looked it up yet, but I assume that this is some sort of yoga. Strange. Well, maybe I'll try it... shouldn't do any harm. Have you ever tried something like that? To be honest, I don't believe in stuff like that at all. But after ALS has been ruled out and I the doc diagnosed BFS, I consider trying it. As we all know, BFS does not have straightforward causes that have been verified by scientific and medical tests. Almost everybody assumes that is has SOMETHING to do with stress, anxiety and so on, but we don't know for sure. The only thing we know is that BFS doesn't cause dangerous things like muscle paralysis and atrophy and so on, so there's nothing to be afraid of if serious diseases like ALS have been ruled out. Therefore, if BFS is such a "weird" thing, it seems logical to battle it with a "weird" therapy. It's like battling fire with fire. What do you think?
oc: "OK, do you have any concerns about your symptoms and your conditions?"Me: ""Concerns" would be an understatement."Doc: "An understatement? Oh my... what exactly are you afraid of?"Me: "ALS..."Doc: *smiles* "OK, one more. No, no, you can't have THAT. Your problem is your anxiety, as I can clearly see, especially together with all the stuff you already had before your muscle twitching started (high pulse, blood pressure, anxiety, etc)."Me: "Okay..."Doc: "Well then, I'll check you for ALS now, and I hope that after that you'll feel much much better."Then he tested almost every possible part of my body with the small hammer. In the knee it made my leg jerk, in other places like the chest nothing happened. After that he did some strength tests: For example he held my hand and told me to move the fingers in a specific way. I also had to stretch my arms and he tried to press them down a little and stuff like that. Then he touched the sole of my foot (I think this was the test for the Babinski reflex). Finally, he squeezed and pressed some of the muscles in my arms and legs and asked whether I felt pain - I didn't of course.After the tests were done he confirmed that everything is OK with me and diagnosed BFS, caused by anxiety and my way of dealing with all sorts of "strange" symptoms. He said that there are people who panic when they the slightest twitch or jerk or trembling or tickling somewhere, but there also are people who don't really care even when their whole arm is paralyzed. I asked about doing an EMG, wether it was necessary, and he answered that there is absolutely no reason to do it and that it would just be unnecessary pain. OK, I wasn't that keen on doing the EMG anyway, as you can possibly see in my post "How painful is an EMG?".The neuro prescribed me a medicine called "Limptar", containing chinine sulfate (hope I translated this correctly). Interestingly, chinine is a natural product you can find in the bark of certain trees. It is even used in tonic and bitter lemon drinks. The medicine is actually something that helps cramping, but he said that it also helps against twitching. The documentation of the medicine says that it somehow loweres the activation threshold of the muscles. However, I'm going to consult my cardiologist before taking it, because it states that people with certain types of heart rythm problems shouldn't take it. My heartbeat does tend to stumble quite often and I am taking a betablocker because of my blood pressure. If this combination turns out to be somehow suspicious, I won't risk taking the medicine, after all the muscle twitching itself doesn't bother me at all and is not dangerous. I also don't want to be afraid of side effects on my heart. I know that I WILL feel them if I take the medicine, even if they actually aren't there. This might however be interesting for all of you who have cramps and pain in addition to muscle twitching and want to get rid of it. BUT: DO NOT JUST BUY MEDICINE WITH CHININE AND TAKE IT (AS OF ALL MEDICINE ANYWAY). TELL YOUR NEURO ABOUT IT AND ASK HIM WETHER IT MAKES SENSE IN YOUR SPECIFIC CASE. BE VERY CAREFUL WITH THIS STUFF IF YOU HAVE HEART PROBLEMS OR IF YOU ARE CURRENTLY TAKING MEDICINE THAT HAS INFLUENCE ON YOUR HEART.He also recommended me something called "Jacobson's Progressive Relaxation Technique". I haven't looked it up yet, but I assume that this is some sort of yoga. Strange. Well, maybe I'll try it... shouldn't do any harm. Have you ever tried something like that? To be honest, I don't believe in stuff like that at all. But after ALS has been ruled out and I the doc diagnosed BFS, I consider trying it. As we all know, BFS does not have straightforward causes that have been verified by scientific and medical tests. Almost everybody assumes that is has SOMETHING to do with stress, anxiety and so on, but we don't know for sure. The only thing we know is that BFS doesn't cause dangerous things like muscle paralysis and atrophy and so on, so there's nothing to be afraid of if serious diseases like ALS have been ruled out. Therefore, if BFS is such a "weird" thing, it seems logical to battle it with a "weird" therapy. It's like battling fire with fire. What do you think?