Seeking Neurologist Advice: ALS Worries

Hi all,Sorry for bothering you all like this, but I got some very bad days. My symptoms get worse and my anxiety is hitting the roof.So I would like to ask some questions. They've been asked here before but just wanted to be said here again...Please only give information that is said by neurologists.1.Clean EMG always wipes out ALS - even when emg was done in the very beginning of the twitching?2.96% present with weakness, so 6% with muscle twitching. So after the twitching has started what's the time limit of feeling weakness.3.Is this really noticeble weakness? You can't have minor symptoms like twitching and stuff for months and then real weakness?4. What do they mean with weakness: tripping over things? problems turning keys or just can't walk anymore???5.If twitching, buzzing get worse and more areas are affected, do I need to worry about als more then?6.Do neurologists make a lot of wrong dx: so first BFS but later ALS ?thanks for those who got the answersBart

Hi Bart,I don't mean to be harsh, but you've been to more neurologists than most of us here, and yet you refuse to believe what they've told you. I could answer--based on my neuro's diagnosis--3-4 of your questions but suggest instead you go back to your own neurologist(s) and hear it from him or her. If you won't believe >4 neurologists and EMGs, I don't believe I can truly help with anything I can relay. You should also seek out a good therapist to help you.Others may want to chime in, but I doubt any answers here will help. Go back to your doctors and LISTEN to what they tell you.Hope you feel better soon.Mark

sorry mark but my body is being so weird, huge amount af twitches even the tonque, weakness left leg, tired, vibrating. So I was just wondering if they could be wrong? Would you please try to answer the questions?kind regardsBart

Hello again, Bart. I'm sorry you're feeling so bad. OK--below are answers based entirely on conversations with my neurologist and my neurosurgeon. 1) Yes, clean EMG means no ALS. He said that it can detect the disease in asymptomatic limbs as well. If twitching is present, and it's due to ALS, the EMG would detect it. You've had several, including one, if I remember correctly, about 6 weeks in. Mine was at 2 months; he said if I had it, "this thing would be going crazy."2) Didn't discuss a "time limit" per se; at my second appointment (when he REFUSED to do a second EMG), I mentioned I was coming up on 5 months of twitching. He said by then, I'd have other signs and symptoms that both he and I could detect.3) Didn't discuss this specifically, but see next answer.4) He said they look for weakness, meaning I couldn't resist him trying to push my fingers together or I couldn't keep my leg extended if he pushed down on it. He (and the neurosurgeon and my rehab/physical therapist) have all done strength testing on me. They do NOT push very hard--at least that I can tell. He said in February that I'd be "dragging my foot." So, yes, certainly by your point in this today, you'd have noticeable weakness like dropping things or tripping, not just feel weak. But--weakness can be caused by a host of other things. Foot drop, for example, can be brought on by nerve damage or impingement, not just neuro-muscular diseases. It's serious and needs attention, but it's not fatal.5) We didn't address getting worse, but I, and many here, have gotten far worse before we got better. He did say, again at my second visit, that the twitching itself didn't matter, no matter how much or where. They look for other symptoms; the "company the twitches keep." He said about 15% of the population has benign twitching at some point or another, and the neurosurgeon and physical therapist both said "everyone twitches" at some point. Maybe not like you and me, but you get the point, I hope.6) Didn't discuss this; he sensed I didn't believe him on the second visit and got noticeably short with me, ordering blood tests as an additional data point. All clean. When I returned in April, he smiled and asked if I was still worried about ALS. I said no, but he proceeded to reassure me anyway. I would speculate, however, that if misdiagnosis of BFS was a common or even frequent occurrence, we'd see evidence of that, considering how much many of us here have scoured the internet--which I have stopped doing, BTW. But again, this is NOT from a conversation with the neuro.Bart--go back to your doctor; seek out a good therapist. Listen to the medical professionals, not your fears.Hope you get to feeling better soon.Mark

Thanks Mark!I know I got so many answers from everybody, you , Sean and my neuro's but still I'm thinking they missed it with me, or the EMG failed (also because I read in another post from someone that her Endo -don't know what that is/means, said the EMG not always detects it) My neuro also said doesn't matter when where or how often you twitch (but 24/7???? pffiew)Also said they have to be accompanied by something elseI emailed 2 of my neuro's after 5.5 monts into twitching and they both said I would expierence other things. One of them is a professor at the univeristy of Antwerp and is doing research for a cure so he would know everything about it right?One neuro said in case of ALS the EMG is always positive. She also said; trust us you don't got ALSI was doing well for a while but now the symptoms are so hard that I'm freaking out again: 24/7 twitching, buzzing, cramps, pain at the back of my knees...I'm getting so tired of it.I made a new appointment with the professor in Antwerp - 4th June (so scared he will say - oops something is wrong we made a mistake :crying:

An endo deals with hormones and is not qualified to talk about an EMG in the same way a neuro is.You should be happy you've had an EMG, my doctor won't even recommend me to a neuro for just twitching.

So weird that in some countries you have to have a note from your GP to be able to see a neuroHere in Belgium it's also likely that the GP refers you but I called the neuro's myself and made an appointment even in the university hospitals. It's our body so we should have to decide who we see.

Bart: Dear, what I think is going on with you is not a neurological disorder but an anxiety disorder. I have to deal with the ups and downs of an anxiety disorder too, but mine is basically under control at this time. Not that I don't have days that are worse than others, but still, I know that this is not permanent. I wish in some ways that I had the workup that you have had. I refuse to spend money just to satisfy my anxiety---not because I and stingy, but because I, like you, would need another, then another, then another. At some point I had to make a decision to believe and then work from there. Anxiety can produce symptoms that are horrendous---it certainly aggravates the twitching and buzzing. Hard as it sounds---find something else to focus on---at first will be seem impossible, but then, each day, week, month, you notice a difference. But know, first and foremost that you are going to be okay.BlessingsCindy

Thanks CindyYou just sound like my psychologist She also said that I would go on and get confirmations from the neuro's over and over again and that I also have to try to put my mind on something else.But it's just so hard with what I'm feeling: twitching 24/7, sometimes it really hurts, the buzzing, the pain...so much and it would all come from a 'good syndrome' That's so hard to understand. Last time I saw a neuro (6th Feb 08), he said, I can't do anything right for you, because if I say you are ok, two weeks later you will ring me back. If I say come and see mee again in 6 months you think I'm not sure of my diagnose... He's probably right...kind regardsBart

Bart, I feel for you. Because you sound just like me. It gets worse for everyday, and you always think "What if". Im so sick of tired of this fear, and about the symptoms that never stops or gets better. Im missing out on my babys first time in life because of this crazy *beep*. But there is nothing I can do because im so afraid. But in your case after all your examinations, You can feel safe! You don´t have ***! Trust your doctors, they know what there doing.I know its easier sad then done, but you have done all tests and you are fine.

@ Swedishgirl,And you have to trust me, you are fine. A lot of people twitch. No need to worry, enjoy your child, you are missing out on some special momentsGet your mind focussed on the baby not on your own body. Please try to get a hold on your axienty before you destroy your life, you really are fine, you just twitch like almost 15% of the population.Bart

Thanks Bart. I haven´t been able to go online in quite a whild, my boyfriend has forbidden me eventhought Im only as this webside. He think we give either crazy ideas. My boyfriend have got twitches as well but his never been afraid of ***.