EMG Results and BFS Anxiety

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vyWelshWizard

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Ok, this is probably a stupid question. My Neurologist told me that BFS would show up on an EMG. That if it doesn't show up on an EMG, the twitching and cramping is classified as being anxiety. I tried to look it up on past posts on this board but I can't get an answer. Sooooo since I had a clean EMG, she told me my twitching, cramping, burning and all other strangesensations are anxiety. Basically people with BFS do not have clean EMG's???? :unsure: If I understand her correctly....which according to my husband....I do not.....and we hear 2 completly different things when the Dr talks. Any ideas?thanks, by the way this board is a livesaver....Cornelia
 
Depends.You can see twitches if the muscle around the needle twitches.My first (after 6 months) EMG didn't even show twitches. My second (meant to be as 1-year-last reassurance) showed 'strange things' in the main twitching spots (leg left), but nowhere else.It like saying "temperature on planet earth is good for life"... True as long as you're not standing naked on a volcano or the north pole.Depends.
 
Thanks Nic for your reply. It makes sense. When the neuro told me,normal EMG no BFS she sounded so shure of herself, but after all I've read on here, about clean EMG's and still BFS I got confused. So when you had your second EMG and theynoticed the twitching did they give you a diagnosis of BFS, or did you get that right away after your first EMG? ThanksCornelia
 
Hello-Having been through the ringer and seeing 2 neuros let me try to help out. First off you must understand that EVERY neuro/GP is different in how they approach twitching. Some will do a clinical exam and say "I see these all the time this is very common and is called BFS". Other neuros will say that that they will do an EMG and after that they will tell you they are BFS. HOWEVER I had a muscular specialist and my first neuro go through 2 EMG/NCV's and then a YEAR later (and about 10 exams) tell me the twitching is benign. I beleive my neuro was concerned because of my severe cramps and constant twitching that it might be SOMETHING but not ALS. He told me that "none of my DX of als have presented with twitches, and typically I can spot something wrong without an emg". Now the Neuro I just went to (reference my most recent post in the support group) said that there is no need for an EMG if your clinical exam is good and she has many patients with twitching that continues for years. Please read my other post and remember that you can twitch wherever, whenever and with different frequencies and it makes NO difference (both neuros told me this). I found out that I was having constant twitches in my arms and legs that I never even saw before. Both neuros told me that you will KNOW something is wrong and so will the doctor on the exam if you are in the beginning of ALS. Now onto the EMGI have studied this for I would say 100 hours so I think I know my stuff:Fasciulations on an EMG have NO bearing on any diagnosis of either ALS or BFS. Both conditions rely on other symptoms and signs to determine which is going on. If an EMG is performed and Fibrilations, denervation and other changes occur then other limbs are tested. To get a diagnosis of ALS you must have 2 lower limbs with these changes as well as an upper limb or bulbar involvement. The way you get diagnosed with BFS (even if you neuro does not say "you have bfs") is if you go in...have a clinical and its clear (way #1). If your doctor does an EMG and its clean...you have BFS (way #). So you will see people in here having doctors saying "this is bfs" with an emg or without an emg. Here is the reason. ALS presents with weakness. I know there are very rare cases where it presents with twitching, however BOTH my neuros said that within a MONTH of having twitches you and your doctor would be pursuing possible ALS. My last neuro said "at 2 months and having an EMG there would have been definate strength problems and EMG findings NO QUESTION". If you want to know what the anxiety of all this can do to you please go and read my previous posts. I do NOT want ANYONE to go through that. Please trust what I am saying because the only reason I am here is to prevent anyone from going through what I did. I was planning my funeral almost litterally and was calling off work and am lucky to still have my job. ****ALSO***** There was a recent post about the speed of twitches related to BFS or ALS. This post was COMPLETELY wrong in terms of you a patient viewing them. This guideline is used when an EMG is performed and they are noted ON THE EMG with OTHER changes! If I went by that I have ALS and I know I dont. I have them all over, every day, fast and slow, visible and not visible. Even my last neuro said "wow you have them all over". But she was not concerned. So if you need someone to talk to send me a PM and I would be happy to talk and help you through this. Keep in mind this is VERY common and its something we deal with, but its not a terminal disease. Its annoying, drives you crazy and is horrible some days. But you will come out the other side and realize how lucky we are to have just ONE symptom and not a disease, thats all.Sean
 
Oh and also I think your neuro ment that "benign fasculations can and do show up on an emg". Maybe he/she said it weird. Meaning if they see them on the EMG with no FIBS/Positive Sharp Waves or other changes its benign"
 
Thanks Sean for your informative reply. I read some of your previous posts, and I am taking effexor, were you able toget off it? If yes did the burning and cramping improve? I don't so much fear that I have ALS anymore, but I do have days when I think it is something more omnious. Especially when my calves are twitching like crazy and I get that crampy feeling in my arms. ARRRRGH ....So when the neuro said it was all anxiety, I am thinking, hey I am taking Effexor and Klonopinso should't this be getting better. If not why am I taxing my system with all this medication! I hate taking medication,but at one point my anxiety was so bad I guess I needed it. I just thought when the anxiety got better the twitching andall the other pleasantries that go along with BFS would improve also. Cornelia
 
Hey!I was taking 75MG's but my neuro wanted me to go to 150 but my GP stopped that because I have had high BP since I was 15. My current neuro told me to quit it cold turkey since I was on 75 (but any more and I would have had to taper). But I had a lagging headache for a few days, but MAN my twitches are MUCH better! I feel SOOO much better also. My suggestion is if you REALLY are not worried about ALS anymore would be to talk to your doc and drop all the meds completely. My Neuro said to drop the meds, get in the gym or work out and releive some stress and drink lots of water and GET LOTS OF SLEEP. True I am still twitching and I knew I would be. SSRI's are good to get people over the HORRIBLE panic that I had where I was calling off work many days. But for some people its a short time period and others its years before the break the ALS fear. It took me about 2 and I dont worry about it anymore. I mean how stupid would it be for me to think I had it, when 2 doctors have seen my twitches with their own eyes, done all the tests and told me that I have BFS. I wish I would have accepted that after the first few months because I wasted so many days thinking I was not going to live much longer. I was really proud of myself for saying to my last neuro "I dont care if I twitch or cramp or shake like a leaf, If you tell me that I am going to be ok then I dont need any medicine and I am going to be fine". I think once you realize you dont have ALS you are happy to just have twitching nomatter if you have cramps or stiffness or feel like crap all the time. Thats where I am at. So what I twitch, I am ready to live again!Sean
 
EMG results can vary from person to person and varies at different times. You can have BFS/BCFS/PNH and may or may not get a reading on an EMG. That doesn't mean you may not get a different reading if you went in on a different day.A neurologist who classifies twitching and cramping as anxiety probably is not aware of the research that's been done on Cramp Fascicualtion Syndrome. We are anxious when we see a neurologist and we have a rare, rather unknown,benign condition, so we are often catagorized as having an anxiety based syndrome because it's an easy answer and one many of us would rather accept given the other altrenatives.I think you may find as I have though that after the anxiety is gone, the symptoms may remain, thereby showing you that you have a physical condition, possible autoimmunity caused, that may need further attention.Hope that helps,Sir_Trouserz
 
Some twitches show up on EMG. Some don't.Some neurologists want to see twitches on the EMG (along with a "clean" neurological exam) before they will give a diagnosis of BFS; otherwise they'll just put it all down to "anxiety", or give no diagnosis at all. Some don't (i.e. it's enough for them that the patient reports the twitches.)If you only have twitches on the EMG, and you also have a "clean" neurological exam, then you don't have anything bad.If you don't have anything show up on the EMG, and you also have a "clean" neurological exam, then you don't have anything bad.
 
Hi thanks for all the replies, I understand it much better now. My Neuro is pretty nice, and she does a lot of workwith ALS patients and Muscular Dystrophy patients, so my complaints were minimal to what she must see on aregular basis. She did mention to me about possibly having pheriphial nerve hyperexcitability, but in the same breathno BFS. So I twitch :D) Cornelia
 
Thank you Sir_Trouserz, I think I have a few more semesters to go before I graduate BFS University....I am trying to get ahandle on it. I just want my life back, and yet I know that is impossible, at least not the way it was. Even if allthe twitching and cramps would go away. Life will never be the same. I don't think it necessarily is a bad thing.I just think this whole experience has changed me on some profound level. Did you ever wonder why anxiety wouldmanifest itself in tremors and twitching, as opposed to IBS, or a rash. Sorry it is probably this kind of thinking thathas got me here in the first place. I'm just glad this place exists, and that I am not the only one.I saw that last interview that Tammy Faye gave on TV, and there she was, so terribly ill, but she still had her fulleye make-up on, saying, don't be afraid. Anyway I was very impressed, grace under pressure, I am ramblingbut thank you, Cornelia
 

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