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I thought for sure I had ALS, here is my story!

Double A

Member
Joined
Feb 1, 2018
Messages
22
Reason
Other
Diagnosis
00/0000
Country
US
State
TX
For everyone reading this I know what your thinking, you want reassurance that everything is ok with you and that your not dying. I was/am one of those people.

My story begins on February 2016 when I was having some numbness and tingling issues with my right foot/toes, saw a podiatrist who was a quack, then saw a orthopedic surgeon thinking it was spine related and he sent me to a local neurologist who was also a quack and found a problem area in my right abductor hallicus muscle. August 2016 I started having my first leg twitch on my right tibalis anterior muscle, went to neurologist in San Antonio who told me and I quote (ever heard of als)? I said no actually I haven't, well its in the differential and you'll have about 2-4 years to live and walked out and closed the door. Imagine what that'll do to someone huh..

So after that I made my first neuromuscular dr appointment in Houston where an emg was done and found multiple muscles showing chronic denervation and fasics but NO als. I still was devastated and in extreme depression and anxiety, add along that I just had my first newborn daughter with a wife who had post partum depression. I started taking out a life insurance policy bc I thought for sure I was dying and wanted my family to be taken care of, I would search constantly about twitching and cramping and look for any reassurance out there including this forum, but it would only help temporarily.

Lets fast forward to now, I've had over 6 emgs with two neuromuscular drs in Houston, one at Baylor and one at Methodist. Both have different findings in my emgs, my last one at Baylor was normal, and Methodist showed improvement but still had chronic denervation w reeinveration, now the reeinnveration is complete unlike before. No psws or fibs, or insertional activity were noted in anyone of my emgs, just fasics and large muaps, reduced recruitment mainly on the affected right leg. So now Baylor said they don't have to see me anymore which is a good thing, and Methodist said well still see you still bc there is an issue with the right tibalis anterior muscle maybe a nueromyotonia but definitely NOT als as its been 3 years and emgs haven't progressed and clinically have improved. Both drs told me if I was twitching for 3 years and it was als, I would be severely disabled or crawling into the drs office, yet I am still walking and I can jog somewhat (bc im fat).

So now its May 2019 nearly 3 years since my symptoms began, point being yes I know I have an issue with a part of my right leg (it cramps, twitches 24/7 since 2016, and gets stiff) but its NOT als but something different. My life for 3 years has been in shambles and thoughts of suicide, and unbearing anxiety seemed too much even though drs said I didn't have it. I understand yalls worry, I was there also so your not alone, but don't be like me, if you have a neuromuscular dr tell you especially a normal emg please forget about als and move on with your life. I nearly lost my family due to this and 3 years of life where ppl with actual als would love to have that.

I felt the need to write this story to help others understand that if your scared bc your twitching and don't have answers your not alone. The main thing that helped me finally put this thing away was TIME to be honest, but if you have a normal emg please forget about it and leave this forum bc it creates unnecessary anxiety that feeds off others anxiety. To the moderators and people on this forum, thank you so much for helping me on my earlier posts about my concerns, they don't go unnoticed. To the people who have ALS, god bless you and my prayers are with you always.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
1,959
Reason
PALS
Diagnosis
07/2017
Country
US
State
Oregon
Thanks for coming back and giving followup and closure to your story. I hope it helps others.

You’ve made a great point, “if you have a neuromuscular dr tell you especially a normal emg please forget about als and move on with your life. I nearly lost my family due to this and 3 years of life where ppl with actual als would love to have that.”

Life is too short for any of us on this planet to waste months or years wasting precious time worrying about things we can not change. This is time that could be spent productively with people that matter to you, enjoying yourself, and growing personally. Even those of us who do have ALS find that we have a better quality of life if we try not to stress over what we can not change and instead focus on what we can do to make our remaining time as rich and fulfilling as possible.

Best of luck to you Double A.
 
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