Ironman23

New member
Joined
Mar 19, 2019
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
ON
Hello

I have been experiencing body wide twitching noticable since December. It seems to be getting worse since then. l am also experiencing weakness in my arms and legs worse after any activity even if it just something simple as getting dressed. I am somewhat worried. I have been refered to an als neurologist as there are findings on my emg in many areas. Decreased recruitment etc. The time to be seen takes so long. Now I am experiencing shortness of breath. Chest feels very heavy and seems to have been getting worse over the past month. There are more symptoms but I'm not here to write a book. It's hard finding help and I feel abandoned. My next appointment is at the end of March. Thanks for hearing me out.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,615
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Hi
I am sorry things are so difficult. I am glad your appointment is almost here- next week?

Without knowing more details it is hard to say what else may be on the table still. I hope it isn’t ALS but if it is we will try to help you here. I believe Ontario has good services through ALS Canada if you get diagnosed

Please let us know how your appointment goes
 

Ironman23

New member
Joined
Mar 19, 2019
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
State
ON
Hello

Just an update. I went to see an als specialist and my clinical exam passed with flying colors. I also had an emg test on my right side that showed no damage other than mild carpal tunnel. The doctor told me I have no als. Diagnosed with bfs. I still have a lot of perceived weakness. I'm still struggling to believe that I don't have it. Now I will focus on my mental help. Take care
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,615
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Thank you for returning to tell us what happened. Best of luck
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
2,422
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
If you previously had yourself absolutely convinced you had ALS, I can imagine it would be challenging to wrap your mind around the idea of not having it. I would suggest planning some sort of celebration to kick off the rest of your life.

I’m happy for you. Best of luck with the mental health issues.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,576
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
This is great news.

In addition to the celebration Karen mentioned, and your commitment to counseling, you might consider volunteering somewhere that assists people who are struggling. It might give you renewed perspective, as well as helping others.

Best,
Laurie
 
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