lisa1215
Member
- Joined
- Apr 11, 2007
- Messages
- 20
- Reason
- Learn about ALS
- Country
- US
- State
- NY
- City
- Rochester
Hi everyone
This is my first posting and I wanted to say hello to everyone and ask some advice to those who have been in the situation of not having a diagnosis for a long time, and if these symptoms sound like they may be ALS..
My face went numb last summer, and ever since, my lips and cheeks twitch. My lips are definitely weaker and I have caught myself drooling a couple of times. My tongue has also gone numb and I have been slurring some words on occasion.
I am having difficulty breathing and am out of breath really easy (like just talking!), my jaw muscles are also noticably weaker and tire out easily. I also have fasics in my thighs and the back of my arms.
I took all these symptoms to a neuro, the MRI came out negative. I had an NCV and EMG completed today and was stunned by the results. The needle in my back and my neck showed "denervation" and the neuro indicated it is a motor neuron involvement. The rest of the testing was abnormal as well because I have CMT (a peripheral neuropathy- I expected the dirty results from my arms and legs- NOT my back and neck..)
Anyway- I am so sorry for the long post but the neuro said today that ALS is a possibility and my brain is going to explode from data overload from the internet. He indicated I would not have a diagnosed for a while until all testing is complete..I am scheduled for a Pulmonary function test and then a follow up with the neuro.. I guess my post has two purposes..First- does this sound like possible ALS? And second, how long does a diagnosed usually take for ALS?
Thank you for listening to my rant and for any advice you may have..I feel like I have been hit by a truck and I am so incredibly frightened of my future right now..
Lisa
This is my first posting and I wanted to say hello to everyone and ask some advice to those who have been in the situation of not having a diagnosis for a long time, and if these symptoms sound like they may be ALS..
My face went numb last summer, and ever since, my lips and cheeks twitch. My lips are definitely weaker and I have caught myself drooling a couple of times. My tongue has also gone numb and I have been slurring some words on occasion.
I am having difficulty breathing and am out of breath really easy (like just talking!), my jaw muscles are also noticably weaker and tire out easily. I also have fasics in my thighs and the back of my arms.
I took all these symptoms to a neuro, the MRI came out negative. I had an NCV and EMG completed today and was stunned by the results. The needle in my back and my neck showed "denervation" and the neuro indicated it is a motor neuron involvement. The rest of the testing was abnormal as well because I have CMT (a peripheral neuropathy- I expected the dirty results from my arms and legs- NOT my back and neck..)
Anyway- I am so sorry for the long post but the neuro said today that ALS is a possibility and my brain is going to explode from data overload from the internet. He indicated I would not have a diagnosed for a while until all testing is complete..I am scheduled for a Pulmonary function test and then a follow up with the neuro.. I guess my post has two purposes..First- does this sound like possible ALS? And second, how long does a diagnosed usually take for ALS?
Thank you for listening to my rant and for any advice you may have..I feel like I have been hit by a truck and I am so incredibly frightened of my future right now..
Lisa