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Old 02-16-2018, 01:19 PM #12 (permalink)
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Join Date: 2018
City: Ashville
State: Alabama
Country: Uni
Interest: Other
Posts: 8
twinsmomscared is on a distinguished road
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 01:59 PM Reason: edited to add paragraph spacing
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