Possible Onset Bulbar Palsy

[billw5012]

Hello ALS community, my name is Bill. First I would like to say how saddening it is to read people's stories and how brave they are fighting the various symptoms of ALS or other MND's. Good luck and God bless to all of you.
My symptoms actually started about 8 months ago wo even knowing it, I am 59 and love running. After one long sprint my heart went into atrial flutter and 3 days later had a cardioversion (shock back into rythym) procedure and everything was fine, I thought. A month after that I started having extra saliva and a little trouble swallowing. Thought nothing of it really until last month when I looked at my tongue. As in the pictures, it has atrophied and now feels like my mouth and tongue are dying. I have a lot of saliva and weird taste sensations in the mouth. Went to a great neurologist and first thing he said looking at my tongue was possible ALS. What a shock! Had my EMG done today, 12/28/17 and he said it looked good, sending me to an ALS clinic in two weeks for more test. Still jogging without any real problems except sometimes have difficulty buttoning my jeans.
Sorry such a long post but asking this great community if anyone else has lost muscle tone in their tongue and their whole mouth is just different. I can still drink and eat but have difficulty swallowing. Oh and my dentist said no throat cancer from dipping tobacco. I posted this here because onset bulbar palsy seems to affect the speech, tongue and respiratory systems. Two weeks is a long time to wait but I have already accepted my fate and made peace with God. Good luck and God bless.

Bill

 

[Nikki J]

Your post was moved because depite your stated forum interest your text indicates you are not at this time diagnosed. I understand your concern but hope that this proves to be something else.

Good luck!

 

[billw5012]

Thank you Nikki-Bill

 

[affected]

Please do let us know what the ALS clinic say and I am hoping they will pin it as something else since your EMG is clean. You are not reporting actual bulbar symptoms although you don't state what you mean by "a little trouble swallowing".

Your tongue indeed looks very strange - my husband was bulbar onset ALS but his tongue looked nothing like that!

Two weeks is not really very long at all, many of us wait months for appointments, so I would suggest you make the most of every day between here and then. We can't really do or say anything in between. All the best.

I would strongly suggest you change your profile to say you are interested in learning about ALS rather than you are diagnosed, and remove the date. It will be very confusing for everyone, and difficult for our members who are paralysed and using eye technology to navigate back and forth to figure out you are not diagnosed.

 

[KimT]

Hi Bill,

When you said your EMG looked good, does that mean the doctor didn't see anything that would indicate ALS?

Make sure you take all your records to the specialist. I know how hard it is to wait and I'm praying you get good news.

 

[billw5012]

Thank you Kim and affected, the ALS clinic will do an EMG on my tongue, uggh!, in two weeks. My difficulty swallowing is that I can swallow, just not very well, I'm having weird taste sensations in my mouth and saliva. I have read where tongue atrophy is related to PBP and Bulbar onset. Your'e right, two weeks is not very long to wait.

 

[KimT]

Bad acid reflux can cause extremely weird taste sensations, tightness in your throat, trouble swallowing, coughing, hoarseness, and a ton of other symptoms. I had an EMG on my neck. It was not much fun but just try to relax. I actually took a Xanax before that and my lumbar puncture. During my first EMG I was shaking so much they had to get another doctor to come in and repeat it. It didn't even hurt but my body had some kind of stress reaction even though I didn't feel nervous. It didn't help that the room was cold.

Anyway, you'll do fine.

 

[billw5012]

Thank you Kim, never had acid reflux problems but what I can't figure out is that I can only find a couple of disfigured nasty looking tongues like mine on the internet. The one or two that I have found reference ALS. :{

 

[billw5012]

Hey Nikki,
Could you delete my post "Possible onset" in the Do I have ALS forum? I've had enough.

Thank you,
William Welch

 

[GregK]

Could you delete my post "Possible onset" in the Do I have ALS forum? I've had enough.

Mod Note

Odd response!

No, but I will close the thread for you.

Good luck!