Reflection from Jacksonville's Mayo Clinic

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BobJazzy

Well-known member
I just returned from my trip to the Mayo clinic in Jacksonville, FL and it was very reassuring! I apologize in advance for the long post but I asked a lot of questions from fellow BFSers and I want to make sure I include everything.First of all, the Mayo clinic is so impressive. My brother came with me and the first thing we saw when we walked in was a classical pianist playing in the waiting area. Everyone is so comforting from the minute you walk in the door til the minute you leave. The first appt I had was with the neurologist. I had all my records from Mass General with me so he took a good look at them, asked me to describe my twitching and any other symptoms that worry me. As expected, I was twitching like crazy so it was easy to show them to him. My calves were going bananas, I induced twitching in my eye by closing my eyes really tight, etc. He took out the "mini-hammer" tool and whacked both calves. Then he grabbed one calf with both hands and stared at the other. He was able to feel them in one calf and see them in the other. Then he gave me the full neurologic exam from head to toe. Afterwards he sat me down and the first thing he said was "As you probably know, what you're feeling and seeing are fasciculations. You clearly have them all over. Fasciculations themselves are of no concern, they are not used to diagnose anything. LOTS of things can cause them. Everyone has fasciculations, however, you obviously have something going on that is causing the nerves in your body to send signals to your muscles which then cause your muscles to react in the form of a fasciculation. Your exam was normal and you don't have any weakness so none of this concerns me at this time. There is something called Benign Fasciculation Syndrome which many people have. People with this condition twitch way more than the average person and we're not really sure why, although we do know of some causes. However, we do know that the twitching is not pathological and it does not turn into anything pathological. It's benign. There is also something called Peripheral Nerve Hyperexciteability which can cause these symptoms as well. This condition can sometimes be detected and diagnosed through a blood test." Then he sent me for my EMG. They tested my left hand, left leg, and butt which I thought was hilarious. The doc seemed to be very interested in my calf as he spent lots of time sticking and prodding there. After the test was done, he told me to sit tight while he grabbed an ultrasound machine. Apparently, the Mayo clinic has recently started analyzing fasciculations by ultrasound as it can give them more information. My legs gave them a great look at BFS fasciculations and he thanked me for giving the the recorded images. I thought that was funny. After my emg, I was able to back to the first neurologist for some follow up questions. Here were some of my questions and his replies:How common is Benign Fasciculation Syndrome? We see lots of patients like you. Patients whose main complaint is twitching.But do they twitch as MUCH as I do? All over? Oh yes. We see many. Just like you.I thought BFS and PNH were pretty much the same, is that not correct? No. Everyone will experience benign fasciculations in their lives. Most people don't even notice them. There are some people, who for whatever reason, who twitch way more than the average person and they can be continuous and all over their body just like yourself. We don't know much about what causes it. Could be medications, the body's response to a virus, lots of things. However, we do know that they are benign. Those people have BFS. BFS is more of an umbrella diagnosis when a person has benign twitching above what we consider 'normal'. It really is only diagnosed by eliminating other causes. PNH, however, is diagnosable. For example, sometimes when the body fights a virus, the anti-bodies that are produced are flawed and will attack the potassium channel. This can cause twitching like we're seeing with you today. We have a blood test (which they gave me, comes back in a week) that can detect these antibodies. So if you test positive for this, we'll know with 100% certainty that you have PNH and it isn't hurting you. However, we will not treat you for it. There is a treatment that involves filtering your blood of these antibodies but if the twitching is not debilitating, its not worth it. I saw in my records that I had a positive Hoffman's sign, some beats of clonus, and brisk reflexes. Is that concerning? No, not at all. Those things are subjective and can be caused by anxiety. Sometimes, if a neurologist detects (or thinks they detect) those things, it will prompt them to order an EMG. However, if the EMG comes back normal or with just fasciculations, then the patient is cleared.What about tongue twitching? Is that more concerning? Not at all. We already know that your body is sending these signals to your muscles and your muscles are reacting. Your tongue is a muscle. There is no reason that it shouldn't twitch just like your legs.Since I have so much twitching in my tongue, why wasn't that EMG'd? Should they have tested it? There is no reason to do an emg of the tongue unless abnormalities are first found in the limbs and body. Its not necessary.But why then do some people have tongue twitching and others don't? Some people have forearm twitching or hand twitching and others don't. There's really no standard to twitching.So does BFS ever turn into anything else? If my emg is clear, could it be abnormal next year? Am I playing a waiting game with this condition? In my experience, no. BFS is benign. There are some VERY RARE cases where someone presents with twitching and then its later discovered that they have a neuromuscular disease. But 99.99% of the time, it is completely benign. There is MOUNDS of evidence to suggest that BFS is not harmful in any way. There is NO evidence to suggest that it is the first sign of anything. So those few patients who go against the rule... we can't even be sure that the two conditions are connected. Will this ever go away? I'd love to tell you that it will. But in all likelihood, you'll probably have periods of time when you won't notice it at all and other periods of increased symptoms. It will likely come and go, wax and wane, and it could actually go away or it could stay. We're not sure. The key is to just ignore it.What about numbness in the hands upon waking up? Its nothing to worry about. Your clinical exam was fine, its not damaging the muscles in your hands. When your nerves are very easily irritated so even resting them on your chest at night can cause the numbness. I'm not concerned about that at all.The last thing he said to me as I was leaving his office was "Matt, if were in your shoes, I would let go of the anxiety. Its not warranted. You have a benign condition."I can honestly say that I am 100% past BFS. I have zero anxiety about my twitching. I am going to stay on this board though because I know there are always people in the earlly stages of BFS who could use some reassurance. Even though this is a very long post, I know I left out lots of info. Please feel free to PM me if you have any questions. Take care everyone! -Matt
 
Matt,What a wonderful post to wake up to this morning! I'm so glad all went well for you and that you decided to share this information. I, for one, will now sleep easier at night! I appreciate you sticking around for us newbies, but hopefully, after this post, we can all let go of our anxiety and enjoy life again! Much thanks,Jeanine :D)
 
Matt, just did a happy dance for you, and for the rest of us. :D) Even though we knew your visit would turn out positive, there's still something about getting that final confirmation. I'm with you, the anxiety about twitching, sensory symptoms, and all the other lovely things that go along with BFS is gone. I still have general anxiety that doesn't help anything, but I'm no longer afraid of what my body is going through. I'm like you, sticking around the boards for newbies and also for the intelligent conversation. ;) Frances
 
Matt glad to hear ur home safe! Thanks so much again for everything and for opening my eyes yesterday! I continue to replay all we talked about every time I have a bad thought! I'm beyond happy for ur great results Matt and it's so great to see u come out of this worrying! so excited to hear about ur next step in ur career :) talk soon, ash
 
Yay Matt!!! What an eloquent and well-thought out post. You have probably reassured almost this entire community of twitchers that we're okay.Thank you so much for being so detailed and asking all the questions you did. You're awesome!Mitra
 
Congrats Matt on getting the reassurance that you needed and thanks for sharing you knowledge with the BFS community. It will surely help some of the newbies and those that still have anxiety with BFS.Mike
 
Where do we send our checks? Do you accept PayPal? hahaSo what we now have is your director of the ASL Clinic at Harvard (Mass General), the head neurologist at Mayo, parlayed with my Director of the ALS clinic here at UCSF on the Left Coast and what you can conclude is.....THIS IS TOTALLY BENIGN, AND MORE COMMON THAN PEOPLE THINK. The chance of us all contracting a rare neurological disease is the same as the general population. About 1 in 100,000.
 
Matt, great post and thank you so much for bringing it back here and writing it up for us. You will help more people today than you will ever realize.However I would like to point something out. Everything that Matt said and explained was already explained pretty thoroughly 8 years ago in BFS in a Nutshell. So while this is an amazing post and it will help a lot of people, there is no reason for people on this board to sit around on pins and needles and wait for everyone to come back with a clean Mayo Clinic report. Alonzo Johnson did a lot of work researching BFS and talking to doctors almost a decade ago, and everything Matt wrote in this post was already pretty well known. Well, okay except for the BFS vs PNH part, that specific explanation I had never heard before.Matt, this has nothing to do with you, I am thrilled that you got a good report and that are ready to move on with your life. Congratulations! I just like to put in a plug for BFS in a Nutshell every so often since it is a document that a lot of us seem to take for granted.Matt's report was great but none of this should be new news to any of us.
 
Yes I'm happy for you Matt, I'm glad that you had a chance to go to this fancy hospital. However I'm also disappointed with there aprach. They do say that they don't know why it happens.... Well maybe it's about time to learn why? Especially that according to the doc many people have this. Also just because something doesn't kill it doesn't mean it's benign... What about people that get pain with fasciculations? Just live your life and ignore that you feel crapy most of your days? .... I'm sorry it's not personal, it's just my frustration with docs ;)
 
Thank u, thank u Matt, I knew u would get good news and you are an angel for sharing it with your fellow twitchers...everything u have said helps all of us who continue to struggle with this weird diagnosis.... :D)
 
Bobajojo, nice post, thak you for sharing. You are the one of those who have similar symptoms to mine as I remember :) You even have nigh numbness (but not night hand tremor I think)...I have a couple of questions if I can.1. How is the PNH diagnosed? You mentioned a blood test? Do you know what kind of blood test?2. You can also induce eyelid twitch like I do (this is the only twitch I can self indulce). Did the doctor mention anything about that the eyelid twitching is negative sign for ALS maybe? Do ALS patients twitch in the eyelid at all or is it PNH all the way?Thanx
 
Jerry,PNH can be detected through anitbodies in the blood. I had a test for antibodies that would interfere with my potassium channel blockers (I think I said that right). The eyelid thing is nothing to be concerned about. I showed it to my neuro at the Mayo clinic. He was not impressed. Here is a video that shows how I can induce the twitching.....-Matt
 

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