Old 02-08-2018, 08:56 AM #1 (permalink)
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Default very concerned I have ALS

I am a 44 year old female with two year old twin daughters. A little background on me, I have had muscle twitches all over my body since I was 19. They have come and gone without any problems. I just notice them and I am otherwise healthy. Lately they have gotten worse and more consistent and seem to twitch everywhere but my right arm. I have been sleeping on a mattress that is pretty old and I am going to see a neurologist today about a possible pinched nerve. I am scared to death. Everything I have read points me in the direction of ALS and it has consumed me. I cannot concentrate on anything else. I have read that anxiety can cause these muscle twitches as well. I am not trying to sound insensitive to those who are suffering from this disease. In fact, the awareness I have now has made me more sensitive to those suffering and they are in my prayers. I just need some reassurance I guess. I am freaking out really bad. Please help!
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Old 02-08-2018, 09:59 AM #2 (permalink)
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Default Re: very concerned I have ALS

Please be reassured that twitching in the absence of muscle function failure is not ALS. Please read the sticky that says “Read before posting”, and you’ll see why you don’t have ALS.
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Old 02-08-2018, 10:23 AM #3 (permalink)
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Default Re: very concerned I have ALS

Thank you for responding. I actually did read that but I have read some much information on the Internet lately that I have become very overwhelmed. (I know...I have done this to myself.) I am also treated for an obsessive disorder and I just wanted some assurance and some advice. I appreciate your reply and it has helped but my mind at ease some. Best wishes and God bless!
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Old 02-09-2018, 08:59 AM #4 (permalink)
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Default Re: very concerned I have ALS

ok I went to the neurologist yesterday. I saw both his nurse practitioner and him. Both did what I guess you will call strength tests. Both of them said it was beautifully done. They did not recommend further testing and the doctor said he was 100% sure I did not have ALS. He said people with ALS usually come see him first for muscle weakness which I obviously showed no signs for. He is a highly recommended doctor in this area in neurology, He said the muscle twitching was benign although he couldn't see them nor did he really look for them..so my question is do I believe what he is telling me and let this go? What you do? I am waiting on a call from my doctor about anxiety medicine....
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Old 02-09-2018, 09:05 AM #5 (permalink)
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Default Re: very concerned I have ALS

Yes, believe him, let this go, go to doc for anxiety and focus on life with your twin babies and not a disease you absolutely do not have. Not even a little bit do you sound like you have ALS.

Enjoy that fact and your nice, physically healthy life.

Take good care.
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Old 02-09-2018, 09:07 AM #6 (permalink)
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Default Re: very concerned I have ALS

He did not spend a lot of time searching for twitches because they don’t matter. You had a normal exam. Yes believe him. Karen already told you our opinion. If anyone had disagreed they would have said so.

Good luck with the anxiety medicine
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Old 02-09-2018, 09:18 AM #7 (permalink)
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Default Re: very concerned I have ALS

Thank you both for the quick responses and I will let this go. However, my prayers and thoughts are with everyone suffering from this as everything I read has convinced me that this is an awful diagnosis. I have learned a lot this week about something I was very unfamiliar with. Thank you so very much for the advice and I pray they are close to finding a cure for this. God bless.
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Old 02-11-2018, 09:26 AM #8 (permalink)
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Default Re: very concerned I have ALS

please don't be mad but I have one question before I put this out of my mind. I think what I'm having are muscle fibrillation. the ones you feel but cannot see and I have read this is a very bad sign. mainly now in my legs. is it possible to feel these fibrillations?
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Old 02-11-2018, 09:31 AM #9 (permalink)
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Default Re: very concerned I have ALS

NO. I don’t know why this is suddenly coming up. You are the third person I have recently answered on this . Fibrillations are an EMG finding they can’t be felt or seen. You have little twitches which are meaningless.

Please don’t worry
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Old 02-12-2018, 12:01 PM #10 (permalink)
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Default Re: very concerned I have ALS

ok thanks for responding. So to clarify: (I want to make sure I clearly I understand the information I have.)
1. If it was ALS, small muscle twitches will come after profound weakness that would have been caught by the Neurologist I saw last week.
2. Because the twitches are fast paced (meaning by the time I feel it, it's gone so I can't actually see it) and random (all over my body), doesn't mean ALS
3. My doctor didn't see the need to do any further testing thus I am clear.
I don't mean to be a pain. I just want to make sure I am thinking in the right direction. I appreciate your patience with me. I know I am obsessive and I am working hard to let this go...
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Old 02-12-2018, 12:07 PM #11 (permalink)
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Default Re: very concerned I have ALS

The answer to all 3 of the above questions is yes.
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Old 02-16-2018, 12:19 PM #12 (permalink)
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Default Re: very concerned I have ALS

O.K. After educating myself on this disease, I wanted to contribute something to this cause. I cannot devote a lot of time right now because I have 2 1/2 year old twins and I teach elementary school so maybe I can help by trying to put someone else at ease.

I am like a lot of you who are worried you may have ALS or at least I was. About a month ago, I was looking up the symptoms for something else when I ran across ALS. Up to that point, I knew very little about it. My anxiety kicked in big time and I feared my twins would grow up without me.

You see, I have the "hit and run" kind of fasciculations. The ones that are single and random all over my body. They are sporadic and are so fast that I have not actually seen one because they stop so quick and move on. It may be 5 seconds, 5 minutes, or 5 hours before I feel another one. I have had them for awhile (since I was 19 and I am now 44.) and never thought a lot about it until I read about ALS on the Internet. That was my first mistake because all of a sudden that is what I had. I couldn't concentrate on anything else. I was reading everything I could and paying no attention to anything else. Life was going on around me and I was not actively participating because of this anxiety. It consumed me because I let it happen. This is no way to live.

In the past two weeks, I have had a clinical physciatrist, a neurology nurse practitioner, a neurologist, and a friend whose spouse has ALS all tell me that I don't have it. Not to mention, the very intelligent, caring people on this forum telling me the same thing. ALL of these people I consider more knowledgeable about this condition than myself. In fact the neurologist told me that he was certain I didn't have it and saw no need in doing any further tests but a clinical exam which he said was beautiful.. He didn't even schedule me for a follow-up. He just said if I needed him for anything else to call. It took a bit for me to calm down and see how irrational my fear had become and how it was affecting those around me.

What I am telling you is if you are concerned GO SEE YOUR DOCTOR and if you have questions that you post about your symptoms, PLEASE LISTEN TO THESE PEOPLE. They are taking their very precious time to help you and I have read so many threads were people argue with them. I still have some anxiety issues related to this but it is getting better and I want to support these people and any effort that is going on to find a cure. And by all means, don't read about this on the Internet. You will find contradicting information out there that will scare you. Trust the experts (the doctors, the caregivers, and those living with this.) BTW the doctor told me that I have benign fasciculations. This is hopefully my last post and I wish everyone the best. I hope that if you are in the same boat I was that this helps you a little.

FASCICULATIONS WITHOUT CLINICAL WEAKNESS IS NOT ALS. If you have fasciculations (no matter the type), they have to accompany other symptoms that could clearly be seen in a neurological exam. Good luck and God Bless.

Last edited by Atsugi : 02-16-2018 at 12:59 PM Reason: edited to add paragraph spacing
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Old 02-16-2018, 12:59 PM #13 (permalink)
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Default Re: very concerned I have ALS

EDIT - THANKS Mike for converting that text from a blob into something readable!

Twinsmom please look at what Mike did and if you have to post here again please make it so it can be read, thanks so much.
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Old 02-16-2018, 01:16 PM #14 (permalink)
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Default Re: very concerned I have ALS

Got it. Thank you Mike. Sorry about that.
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