Lip tremors tired tongue

[enidoreilley]

To begin with, I have seen a neuro. I have diagnosed IIH (high intracranial pressure) and already had a follow up appointment where I mentioned these new symptoms. I am awaiting CPK levels.

About 1 week ago my lip froze. I couldn't move it - it was just my upper lip and it drooped down and hung like that for about 30 minutes. Gradually I got movement back in it and that exact episode hasn't happened since. Leading up to that happening I had been drinking wine with a friend and we took a brisk walk together. She was concerned and wanted to call 911 because she thought I was having a stroke, but I had no other stroke symptoms. I mention the walk because I have noticed that my lip starts to feel a little numb when I have walked since. I haven't been to the gym lately, so my only exercise has been in the cold, so I don't really know if it is cold or exercise related (both of these, I understand, point away from ALS)

This week I have been getting tired eating. Like, my tongue feels like it is working too hard.

I have ongoing, nearly constant lip tremors. They are slight, but definitely observable.

I have also been losing weight without doing anything to try to lose weight. I am very overweight, so at first this was fun and welcome, but in light of the other odd things going on, I am somewhat concerned.

Otherwise, my speech is normal, albeit with clumsy lips, I see no tremors in my tongue, and have no difficulty swallowing.

Does any of this track with ALS? I am very appreciative for any guidance anyone can give me. I know I should just relax and wait for the doctor to direct me, but I have been a little bit shaken by all of this.

 

[Atsugi]

Nope, not ALS at all.

For one thing, ALS doesn't get better; it doesn't come and go.

ALS is a brain disease. It destroys certain nerves in the brain--the ones which control your voluntary muscles. Once a nerve is affected, it can't send the "go" signal to its corresponding muscle. Since the muscle doesn't get any command to move, it lays there, getting no exercise, doing no work; so it doesn't feel tired, overworked, or anything. The muscle won't feel weak--it just won't go. The muscle won't feel numb or "strange." It just lays there and won't work.

Twitches, tremors, etc., are very common to many conditions, so they are pretty meaningless in diagnosing anything. Even healthy people twitch. Drink some gatorade for the electrolytes.

Again, there is no reason whatsoever for you to be thinking about ALS.

 

[enidoreilley]

Thank you so much for taking the time to respond. I will continue working with my doctor. I was hoping he would just attribute it to IIH but he seemed so concerned that it kind of disturbed me.

 

[enidoreilley]

I'm so sorry for coming back. I am having such strange lip issues. My upper lip feels... weird. It feels stiff and I can't pucker fully, but just on the top. I can't suck my lips into my mouth, but really just the top lip. I can still smile, talk normally, etc. It almost feels like the lip is just swollen but it looks normal.

I'm sorry to be bugging you guys. I just don't know if I should keep calling my neuro. It has been like this for a couple days. The twitching has basically stopped. My CPK levels came back normal, but I hear that that doesn't mean anything for ALS, especially bulbar onset. Should I push for an EMG?

 

[Nikki J]

It really doesn’t sound like ALS from my family’s experience or what I have been told/ read.

You said your neuro seemed so concerned. If he was thinking ALS surely he would have arranged an EMG. He must have made a plan if he was concerned. I suggest you follow whatever he suggested

 

[enidoreilley]

I am trying to remain calm while I wait on my next phone appointment with my neurologist. I am very focused on my tongue which I know impacts my ability to really get a feeling for my symptoms.

I am so sorry to pose this question here, but my tongue is beginning to look different. I am pronouncing certain letters weird (m, n, ng), and I slightly aspirate on liquids, occasionally.

I am including two pictures of my tongue (I know, I am so sorry). Does this look like atrophy? I sincerely don't know if this warrants a sooner call to my neurologist.

 

[GregK]

Please stop.
Please no more pictures! It looks oddly like a tongue! That's all.

You've been told NO by at least two senior members, take it to heart.

See your Doctor for your follow up concerns, but leave the word 'ALS' out of the discussion.

frozen lips, seriously... that's a first.

 

[KimT]

No, your tongue does not look like it has atrophy.

Take Greg's advice.

 

[enidoreilley]

I really appreciate everyone who's taken the time to respond. I apologise for being so anxious. I'll stick to annoying my doctors. God bless.

 

[KimT]

I see you're still reading posts on this forum. I really don't think this will help you.

Call your doctor and let him know you are upset and need a return appointment. You said you were overweight and that is a health risk for many things. Please work with your doctor.