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could this be als

My symptoms started in april of 2019 I was having problems with my feet and legs. Then in May of 2019 I woke one morning with cramps and twitching in my feet and legs. I saw a neurologist in June of 2019 who did exam and emg of my legs and the only thing that was found fasciculations in my calves so move forward to October 2019 I saw another neuro who also did exam and emg of my legs and still no positive sharp waves or fibrillations so i was diagnosed with benign fasciculation syndrome. But now I am still having twitching in my legs and feet 24/7 and I also have twitching randomly in arms abdomen along with cramps,my back,butt shoulders and between my thumb and forefinger and also my left eye brow. I emg in january 2020 on my arms and muscle between my forefinger and everything was normal. I do have weakness but not clinically I can still do everything I used to but some things are more difficult. My hands are numb sometimes like when I drive and when I first wake up in the morning. My back also hurts. I have had all blood work done and lumbar mri and cervical mri done. Lumbar mri was normal cervical mri showed bulging disc and mild stenosis c5 c6. I am just still worried that this could be slow progressive als.                                                                                                                                                                                            
1 Responses
973741 tn?1342342773
Hi and welcome!  Well, that sounds a bit frightening.  I'm sorry you have to worry about this situation for sure!  I think you've been wise to see your doctors and neurologists and you've gotten multiple opinions, correct?  That should be somewhat reassuring but it sounds like you still don't trust them.  This article really talks about the difference between benign fasciculation syndrome and ALS.   https://www.medicalnewstoday.com/articles/320388#overview  It does state that the two can look similar so it is important for doctors to make sure of diagnosis.  I have to believe your neurologist knows the importance of that.  The article has a long section on causes of BFS that they suspect could contribute.  Take a look and see if anything at all rings a bell.  Anxiety and stress are on the list, by the way.  Here is from the article that they do to rule out more serious disorders than BFS:   they may also do neurological testing, blood work, and electromyography (EMG) to rule out nerve damage. BFS is not associated with nerve damage, so finding any nerve damage would be a sign of a different disorder.  They also give a few easy things you can try although I will say in reading them, they probably won't soothe your mind on this.  Things like taking up yoga and spending time with your pets.  But also diet changes and lifestyle changes.

If you were my loved one, I'd say after the corona scare is not as prevalent, I'd schedule another appointment to discuss this.  I'd go or the heavy testing this article suggests to be absolutely sure it is not ALS.  Just for your peace of mind and because they CAN look so similar at the early stage of als.  I would say too, go ahead and look into some of the things this article says you can do to self treat BFS to see if it improves things at all.  Here's another article.  https://www.healthline.com/health/benign-fasciculation-syndrome#treatment
2 Comments
Yes I have seen two neurologist in the last year both have told me that the emgs were normal other than fasciculations. My next question is could emg miss this if it was als. I am just scared that something was missed I have two kids and I fear the worse
I understand why you are afraid.  The thing is, a neurologist and TWO neurologists would know this as a concern.  They'd ethically be trying to figure that specific thing out.  You must be presenting differently than what an ALS patient would or you'd not have two doctors make the same diagnosis.  You can always go for three when the covid-19 scare is over but at some point, you have to trust them.  :>)  I'd also, do the lifestyle things they mention to see if it helps.  
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