Als concerns

[Katysmith]

Hi I’m having so many concerns about my health. I’m having cognitive issues, ringing in the ears, so much extra saliva. I’m also having muscle weakness. I choke in my sleep, my neck is heavy and my tongue is getting shorter. All of my muscles feel softer and I have cramps in my muscles. I’m so nervous about this Does this sound like als?

 

[Bestfriends14]

No, not at all. What has your doctor said?

 

[Katysmith]

Thanks for responding. I forgot to mention that I have muscle twitches also. This has been happening since January. I really think it’s the one related to frontal lobe dementia. I failed the cognitive test and I definitely have muscle wasting but the Emg was clean for now. I have those bulbar problems also and I yawn a lot during the day and choke in my sleep. I’m so scared and confused I have cervical spine spondylosis and disc height loss. I was in a horrible accident 20 years ago and I think it’s spine and brain related

 

[affected]

What does your doctor say?

 

[Katysmith]

The neurologist said that I didn’t have it but I’m still concerned. My muscles are definitely wasting

 

[affected]

Thanks Katy, please go back to your primary doctor and work with them.
I'm sorry you are experiencing this but I don't see ALS nor FTD, but as you said you could have something stemming from the accident and it is worth talking to your primary doctor again to decide which direction to take next.

 

[Katysmith]

Ok thank you I also forgot to add that I had a brain mri in January and it had a white matter lesion on my anterior frontal lobe. I just don’t feel organized like I used to and my motivation is gone.

 

[lgelb]

What I would ask the neurologist is what s/he thinks you might have, in terms of neurological disorders, if anything. If there is nothing wrong neurologically, returning to your primary care doctor for evaluation is the other move. Having honest conversation(s) with them about the problems that trouble you the most, will help focus on the next steps to feel better.

Best,
Laurie

 

[Katysmith]

They said nothing but it feels like something is going on for sure. I’ve been getting the run around for months. Nothing is connecting. I really think I have frontal lobe dementia with als that was triggered by an epidural last year. I was fine before that. My doctors aren’t really helping much

 

[affected]

Katy, truly I have never heard of someone developing two separate terminal diseases as a result of an epidural.
I'm so sorry for all you are going through.
Only doctors can help, maybe you need to go for a second opinion.
As we cannot examine you, nor run tests, we can't do anything further I'm afraid.

 

[Bestfriends14]

People with FTD don't realise they have FTD. In fact, they often think they are completely fine and it's others around them that have something wrong. What makes you think you have something so rare? Your symptoms don't say so, so what is it?