Status
Not open for further replies.

confusedDad2

New member
Joined
Mar 25, 2019
Messages
7
Reason
Learn about ALS
Country
US
State
NJ
City
NJ
This is my 1st post on this site and I want to say I really admire how nice and helpful everyone who responds on this site is. The fact that you take the time out of your days to help people who have questions is really remarkable.

I've been looking at posts on this site for a few months and wants to post my story and get your opinion. I understand that you can't diagnose anything but I am more interested in your opinion based on your experiences.

Starting in the 1st week of Dec, I woke up 1 day and noticed a twitch in my left thigh and it persisted for about 4-5 days. Of Course I did what most people do and googles "Thigh Twitch" and up came up about 25 ALS websites with stories on how they 1st noticed a twitch, etc. From there as I read more and became more anxious the twitching spread a bit. 1st in both arches of my feet for a few weeks and then I noticed them in both my calves. The twitching is still there in my calves but now I get random twitches basically all over my body.

So I Jan 2nd(after a month of wondering and reading online) I went to PCP and told her about my concerns and she said its prob anxiety but did give me a quick strength test and said all was fine. But if I didn't believe her (she could see on my face I was super nervous) she'd refer me to a Neruo. I saw the Neuro on Jan 21st who basically laughed at me when I told him what was going on and said he doesn't see anything based on me sitting there and my age (34) but if I needed peace of mind we can do an EMG. Jan 23rd I had an EMG of my right foot,calf, thigh, Deltoid, Forearm,Hand, Thoracic Paraspinal, and LF Paraspinal. According to the Neuro who performed the EMG, all was clear and No Fasciculations were present nor denervation/reinervation changes and said its BFS.

I consulted a 2nd NEURO because I didn't like that I wasnt given a full Neuro exam. He did a full exam and said my reflexes were fine, no weakness, etc.

About a week (around Fed 1st)after there I started having some issues with my tongue. It was burning on the sides and across the middle and has persisted over the last few weeks. I feel like I am slurring or mispronounce word especially that end in S or TH. Also, have had a lot of issues with clearing my throat and not able to get up phelgm, etc.

I've read the stickys but my questions is this. Is it at all possible for BULBAR ALS to present this way. Could the EMG have missed something going on since it was primarily done in my lower body ? I appreciate any information or personal experience you can give me to help me better understand what is possible if anything going on.

Thank you
 
Status
Not open for further replies.
Top