Constant Tongue Fasciculations: Dr. Barkhaus

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Karen92

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I emailed my neuro to tell her that the tongue fascics are now constant. If I stick out my tongue and then relax it the entire surface is covered with little twitches. Every time. Plus I feel it twitching at all other times too, in addition to every other inch of my bodyShe responded that she thought I should see Dr Barkhaus at the Medical College of Wisconsin. A quick Google search revealed that Dr. Barkhaus runs an ALS clinic and is an ALS researcher. So it looks like I should be leaving this board too and heading over to the ALS boards. I am devastated.
 
mamakaren,Don't get ahead of yourself here....I know it is hard to deal with the anxiety associated with fascics, especially tongue fascics, but that doesn't mean you have als. Also, you should be glad that you have been referred to a top neuro. In my opinion, people should see the most highly qualified neuro they can get into see. For many of us, that takes many appts. with lesser docs before we get to the best. For you, that process appears to have been shortened.Not being familiar with your story (sorry), I have to ask what your referring neuro dx'd you with? If your local neuro said bfs, you can be confident that you don't have als. 9 out of 10 times (with BFS), docs send you out to specialists not because THEY think you need it, but because most of us with bfs will not accept the dx.....I mean, how could we initially accept a dx of a benign condition when we feel so crappy and we twitch so much It is incredibly hard in the beginning to do so, because one can never get away from the symptoms. Time is the only thing that brings certainty to most people that this annoying and life altering syndrome is truly benign.One way or another, you should feel lucky to be able to go see an als specialist. Not lucky because you are suffering, but rather because when he/she gives you a dx of bfs you can believe in the dx and get on with you life. Last thing, leave the als boards to those that have already received a dx of als and their loved ones.....you can become an als expert in the future, if needed. Fear and despair will be the only things you find at those sites.Take care,Gary
 
My referring doc did a nerve conduction and emg on both legs and one arm. There were no abnormalities. She said to let her know if things changed or worsened so I did when the fascics settled in my tongue. This is when she referred me to the ALS doc.Karen
 
Hi there, I am so sorry you are having to go thru another exam. This happened to KarinJoy420 from our forum too. She went to the **S specialist and was cleared. Please don't get ahead of yourself. When is your appt.? I still believe you are benign considering your clear EMG and that was only 2 weeks ago. Hang in there. We are here for you.Linda
 
mamakaren: Don't make any predictions here. I have a feeling your neuro already had in mind this step when she told you to call if anything changed. I'd be willing to bet that she/he did this because she wanted you to hear from another specialist. Don't be too quick to jump on the wagon. I'm willing to bet that you'll be stuck here with us! :D) Praying for you!Cindy
 
I am guessing that you are being referred to an ALS specialist in order to get this thing out of your mind once and for all. If you have had clean clinical and EMG exams, then ALS would seem impossible. I read an article from Dr. Barkhaus who said that one of the biggest mistakes poeple make is to self diagnose ALS because of muscle twitching. I can tell from experience that if you really get yuorself worked up, you can make your tongue go crazy. I had a day about a year ago when I knew I was doomed because of my wacky tongue movements. A talk with this specialist may be just what you need. Let us know. Later...
 
Thanks so much for the support, everyone. :) I am feeling better--although my tongue is still jumping.My husband and I moved about 20 boxes of books last night--and I carried them up 2 flights of stairs! No weakness here--just a weird and distracting twitching problem.We'll see what Dr. Barkhaus says--but if he says no ALS I will have to believe him.Karen
 
Hi Karen, glad you are feeling better today. When do you see the new doc? Hope it is soon, so you can move on with your BFS diagnosis!!Linda
 
My first doc also did some test, normal of course, and after I went back with what I thought were new symptoms, he also send me to a neuro... It turned out that the first muscle specialist indeed wanted me to be told by a specialist that I was fine, otherwise I would not believe it (it still took me several other months to 'believe' it, but that's another story ;) )With a clean EMG you're fine - he/she just want you to be told that by a specialist. Your first doc's only concern was obviously to avoid you freaking out - or actually possibly to have you to freak out in someone else's practice...Just please do not go for the same OCD that many of us here have experienced - just believe your neuro...When is your neuro appointment? A suspected MND would have you being seen the same day or the next...
 
Just because he runs an ALS clinic, that is nothing to worry about. The neuro I am seeing is also a specialist on MS but that doesn't mean it is a possibility.He is a neuro and will be objective...I hate giving advice because I am so bad at accepting it myself, but I hope you can get some peace from it...
 
Mamakarenwhen at first I had my first simpsoms I went to my own neuro , he said that it was nothing to worry about , he sent to an emg for my piece of mind. the emg was fine exept for some fasciculations and some giant mups in feet, but nothing concerned about mnd. As I was very frightened he referred me to the best specialist in pheriperal nerves and mnd, only for my piece of mind.I had my appointment . he made me a clinical which lasted almost an our, he`said everithing was fine,he looked at my tongue and he he saw some movement on it and that he would do an emg on my tongue. There was no signs of denervation. He said that I don`t have anything siniestr and that he thougt I have myokimia.After one month, as I continued to be frightened I asked for a new appointment. He asked me why I had come back? he made a new clinical and everything was fine too. He said if this continue I should come back in one year.A month later I phoned to him. and he said that I had the same chances to have an mnd like him.9 monthes passed and as I can`t wait for 1 year I made a new appointment for next weak.I understand to you. I mean that this condition is very strange and no matter how many times doctors say we are fine, we become confident for a time, and then we need to be reashured.Adri
 
They cannot see me until August 1st. My husband is switching jobs so we won't have insurance coverage until September 1st so I am going to have to wait until then. The fascics remain constant but I have no weakness at all (biked 6 miles today and spent 2 hours in a pedal boat on a small lake)I just wish this would STOP!
 
Karen,I just wanted to share my Neuro experience with you. I have been seeing a very qualified Neurologist since September of 2007. He worked in an ALS Clinic during his fellowship and is board certified in electrodiagnostic medicine. Anyway, I've seen him 5 or 6 times and he says I'm totally healthy. I've continued to express my fears of ALS to him. Back in December he really encouraged me to get a second opinion. He flat out stated that I would be told the same thing he told me but he felt I needed to hear it from someone else. I never did. I continued to see him for the first half of 08 and continued to have clean clincials etc. He even gave me an EMG only for "peace of mind". So in Feb he suggested I go to the Mayo Clinic and see a specialist but I didn't. I saw him again in April and he really encouraged me to go to Mayo. He said "I think you need to hear it from the experts". Throughout my last appt that's all he talked to me about. I have not done so yet. I don't see him again until October. I am confident that your Neuro senses your anxiety and feels the same way my did. Keep us updated.Take care,CDC
 
It seems that the general neuros make the diagnosis so infrequently that they tend to refer to a specialty center even when they have a low suspicion for any bad diagnosis. This is the nature of medicine in general so dont let the referral bother you. As a general doc (of sort), I can tell you that when things dont make sense we tend to refer to an authority in the field even when we have a strong feeling there is nothing wrong. You may need someone to look you in the eye and tell you you are fine which is likely what you can expect. Good Luck
 

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