Continued Worry! Sorry for posting another thread, my last one was closed

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NJTwitch96

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Sorry for posting another thread, but I have a follow up to my last post, and that thread was closed.

I started having muscle twitches in random spots all over my body, which started in my eye, then moved to my right arm, and were mainly focused on my calves and feet. The frequency of them all has decreased now greatly. In fact, some days, I barely feel a twitch at all. I still have trouble swallowing, which is worse some days than others. However, my last few days have been better than the days before, but that has changed some days with more difficulty than others.

I previously had a Chiari decompression surgery, and have herniated discs, and damage from a cyst that was on my spine. I went to my GP, who said she didn't think it was ALS or MS. My doctor also put me on Zoloft because she said it sounds like I have health anxiety. I then emailed my neurosurgeon, who told me to see a neurologist. I went to a neurologist, who has a specialized interest in MND. She used to only see ALS patients, but now does general neurology as well. She also said it wasn't ALS. In fact, she said 100% she knew it wasn't ALS. I had no hyperflexxia, and no muscle weakness. She also said slurred speech would be the first sign of bulbar, not difficulty swallowing. She's having me do an MRI this week though.

So, I went to an ENT, who looked down my throat with a camera and diagnosed me with LPR, which she said could be causing my difficulty swallowing. She put me on Omeprazole for that. I've also had a sore throat for a little over a week, and an on and off hoarse voice. The doctor said that LPR can cause that too. I've also been anxiously biting my cheeks skin on the inside of my mouth, as a nervous tick.

Today and yesterday I noticed I have extra saliva in my mouth. I'm not drooling, but I can tell I have more than usual. Should I be worried this is a sign of my neurologist missing ALS?
 

KarenNWendyn

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I went to a neurologist, who has a specialized interest in MND. She used to only see ALS patients, but now does general neurology as well. She also said it wasn't ALS. In fact, she said 100% she knew it wasn't ALS. I had no hyperflexxia, and no muscle weakness. She also said slurred speech would be the first sign of bulbar, not difficulty swallowing.
Here is previous thread: ALS Worries

Listen to your neurologist. Slurred speech tends to be the first sign of bulbar. Reflux can indeed affect voice. And without hyperreflexia or weakness on a neurologist’s exam, there’s not much of a case here for ALS.

Twitching is common, nonspecific, and meaningless. It doesn’t matter how much you twitch, how often, how widespread, or severe. Lots of normal healthy people twitch. Anxiety makes it worse.

It sounds like you are under the care of a good neurologist and a good ENT. I suggest following their recommendations. There’s not much more we can offer you.
 

NJTwitch96

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Thank you for your quick reply! I guess my main worry is about the excess saliva today and yesterday? That’s what’s creeping me out most now. But I agree with you, I need to listen to my doctors.
 

NJTwitch96

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Just as a follow up, because I’m curious, can allergies, the reflux, or inflammation from biting my cheeks cause excess saliva? I’ve also been sneezing a lot, and had a clogged nose this week.
 

lgelb

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Yup, all of the above can increase saliva. A nasal steroid could be worth trying.
 

NJTwitch96

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Yup, all of the above can increase saliva. A nasal steroid could be worth trying.
Thanks for the reply! I spoke to my ENT, we’re not at nasal steroids yet, but she said it sounds like a combination of allergies and damage from my reflux.

I have my MRI tomorrow, so I’ll update you all on what the doctor ends up saying I have. My neurologist just called me this morning to talk things over before the scans, looks like it’s either MS or something benign/anxiety.
 

NJTwitch96

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Hi all! Hopefully I’ll get my results from my MRI soon, and I have my appoint with a therapist to start counseling on Thursday for health anxiety.

So I just have a question about ALS and anxiety. My twitching has gone down significantly, with no weakness at all in the limbs impacted. And my swallowing has also gotten much better too. I went from not benign able to swallow much at all, to eating full meals with things like meat, chicken, sandwiches, salad, and pasta.

But now I feel like my speaking is changing, as the other things are getting better. I feel like I’m slurring, or saying my S’s and C’s differently. No one around me has noticed my voice changing at all, and everyone says my voice is normal and not slurring. I’ve noticed that on certain words my teeth also hit my tongue. But, I also feel like I’m paying more attention to my speech as well.

Can anxiety cause all of these symptoms with my speaking? I just feel like if the other things are starting to get better and improve, that ALS isn’t really a possibility. Coupling that with my neurologist and PCP both telling me ALS isn’t a possibility either. But, I’m still worried.
 

lgelb

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You wrote your own answer. You're paying more attention to your speech. That makes it harder. Since no one else has noticed anything and all say your speech is normal, you can be sure that it is, and therefore your perceptions are playing you false. So, glad to hear you are getting counseling for health anxiety. Tell the counselor about thoughts like this.

Best,
Laurie
 

NJTwitch96

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You wrote your own answer. You're paying more attention to your speech. That makes it harder. Since no one else has noticed anything and all say your speech is normal, you can be sure that it is, and therefore your perceptions are playing you false. So, glad to hear you are getting counseling for health anxiety. Tell the counselor about thoughts like this.

Best,
Laurie
Thanks for the quick reply! I’ll be sure to talk to the counselor about these thoughts. Hopefully I can start to put these problems behind me and go back to my normal life soon.
 

NJTwitch96

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I’ll let the others talk about ALS symptoms, but I recently saw a MND neurologist, so I can talk about what a visit is like.

My neurologist first listened to what I had to say. She asked me what my symptoms were like, when they started, and about my past medical history. After that, she did her exam.

The exam was pretty straightforward. She checked my cranky nerve strength, and made me do the usual tests(finger to nose, close my eyes and don’t let her open them, etc.)

Then she checked my strength by having push against her resistance. After that, she checked my reflexes. From there, she was able to pretty much rule certain things out and say what other things could be causing my problems.

I will say you’re right about not getting an EMG right away. My neurologist said she prefers to see if symptoms clear before putting someone through that. Also, if you’re younger and a neurological exam is normal, they would also like to hold off on an EMG because of how unlikely it is to be something serious. Now, I have other issues, like herniated discs and damage to my spine from a cyst, so my neurologist ordered an MRI. Yours may or may not choose to do so.
 

KarenNWendyn

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NJ, I moved your last post out of another’s thread back to this one. We request that undiagnosed people remain in their own thread, per forum rules. You may contact others through their individual profile. Thank you.
 

Clearwater AL

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I’ll let the others talk about ALS symptoms, but I recently saw a MND neurologist, so I can talk about
what a visit is like.

“…so I can talk about what a visit is like.” I find that unique… are you about to
tell us what a visit to a Neurologist is like?

Then… “I will say you’re right about not getting an EMG right away.”

Who said that? I can’t find where any of our extremely knowledgeable ALS
members implied that.

You wrote, to repeat what Karen noted above…

“I went to a neurologist, who has a specialized interest in MND. She used to only see ALS patients, but now does general neurology as well. She also said it wasn't ALS. In fact, she said 100% she knew it wasn't ALS.”

Further down your apparent reluctance to accept you don’t have ALS your
following symptoms after the paragraph above you got a diagnosis…

“So, I went to an ENT, who looked down my throat with a camera and diagnosed me with LPR, which she said could be causing my difficulty swallowing.”

I’ve been said to be too blunt at times. So I’ll try not to be too blunt but ask…
why are you still here? :)

The smiley is my attempt of not being too blunt
 

NJTwitch96

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I’ll let the others talk about ALS symptoms, but I recently saw a MND neurologist, so I can talk about
what a visit is like.

“…so I can talk about what a visit is like.” I find that unique… are you about to
tell us what a visit to a Neurologist is like?

Then… “I will say you’re right about not getting an EMG right away.”

Who said that? I can’t find where any of our extremely knowledgeable ALS
members implied that.

You wrote, to repeat what Karen noted above…

“I went to a neurologist, who has a specialized interest in MND. She used to only see ALS patients, but now does general neurology as well. She also said it wasn't ALS. In fact, she said 100% she knew it wasn't ALS.”

Further down your apparent reluctance to accept you don’t have ALS your
following symptoms after the paragraph above you got a diagnosis…

“So, I went to an ENT, who looked down my throat with a camera and diagnosed me with LPR, which she said could be causing my difficulty swallowing.”

I’ve been said to be too blunt at times. So I’ll try not to be too blunt but ask…
why are you still here? :)

The smiley is my attempt of not being too blunt
Blunt doesn’t have to be a bad thing! I’m generally blunt too in person.

I guess I’ve been hanging around here because it’s seemingly one thing after the other these last few months. Now that my swallowing is getting better and the twitchy g is going down, I feel like I’m talking differently and my tongue is doing strange things when I talk.

I know it’s all anxiety in my logical part of my brain, but there’s always that thing in the back of my head screaming danger.

It’s a terrible thing, but you’re right, I need to start getting back on with my life.
 

KarenNWendyn

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Improvement in swallowing along with everything else you’ve posted goes against ALS. So yes, time to put ALS fears behind you and move on. Best of luck.
 

NJTwitch96

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Improvement in swallowing along with everything else you’ve posted goes against ALS. So yes, time to put ALS fears behind you and move on. Best of luck.
Thank you! I have some doctors visits for my issues coming up, so I’ll let you know they all end up saying!

I have one more question, but it’s completely off topic. Karen, is that a golden doodle in your profile picture? I have a golden myself, and he looks just like that, except with white fur!
 
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