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aregs

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Hello. I have been reading on this site for weeks. I have been very anxious about my symptoms, but just today experienced something that has me very panicked. I am hoping someone can read this and let me know what they think.

Brief background - starting twitching late October 15. EMG done on limbs and hands (no throat or tounge) 11-3 and was clear. Neuro told me to go home and take a Xanax.

After that my tounge started twitching (while at rest in my mouth) and I called the Neuro who said they would not see me again and I needed to go to a specialist.

I saw an ALS specialist at Robert Wood Johnson yesterday. She scheduled EMG for 1-11, but told me she does not think I have als.

However, on Saturday I also started getting hoarse and my voice is still hoarse today - no better. I wasn't concerned at first because I had a sore throat, but all other symptoms are now gone and I'm still hoarse. Specialist said not to worry if I'm not slurring, which I don't think I am, but I've read hoarseness can precede slurring.

Just today, I had the odd sensation that water was coming to come out my nose after drinking, and I then sneezed. Of course I then read that nasal regurgitation is an early bulbar symptom and often comes with hoarseness. Now I'm panicked. I then to test it out guzzled a whole bottle of water and no sneezing or water coming out my nose.

I'd appreciate any thoughts. I have two little kids I love more than life and I'm scared.
 
My husband died of bulbar- and your symptoms are nothing like it. Please read the Stickies. The doctor said it doesn't look like ALS- rest at ease. If anything, see an ENT doctor. God luck.
 
Thank you for taking the time to reply. Your kind words mean the world to me and I'm so sorry for your loss.
 
My husband also died of bulbar ALS and you are not describing even one thing remotely similar.

That's really all we can tell you on the internet. Work with your doctors, they are seeing you and have all the knowledge needed to help you.
 
My husband has bulbar onset. Your symptoms are nothing similar to his symptoms, not even his early symptoms. Best wishes.
Tracy
 
Face symptoms

Hello. I've been trying to avoid posting here again but I'm at the end of my rope.

I will not make a long post about all my symptoms but a short list includes lots of twitching, throat symptoms, hoarse voice and perceived weakness. I've spent a lot of time trying to convince myself this is bfs but it seems like everyday there is a new concerning symptom.

Today my jaw feels tired and stiff and I feel almost a pressure in my face. Like I'm aware of my face all the time. I was thinking jaw clenching from stress but now I've noticed that when I smile there is a crease above my lip that's never been there before. When I frown the muscles on either side of my mouth do not look the same - one side is higher than the other. And when I hold a smile my face a lips tremble. Also some face twitching today which I've not had a lot of.

So my question is has anyone had symptoms like these as early signs of facial weakness/bulbar onset. Thanks for any thoughts.
 
Wall,
First, I moved your last post back to your original thread. One thread to a DIHALS customer here, as you can see in the stickies.

Were you tested for Lyme? If not, I would be, at your PCP's, just to be safe. Stroke can produce the weakness/trembling, as can Bell's Palsy, but I presume they screened you for those.

As we have said, ALS isn't what we think of with your description, so please stay reassured on that point. Not every nutritional deficit shows up on a blood test, so make sure you are eating the right food (no twitch was ever worsened by a banana smoothie), getting enough sleep and doing something every day that you actually want to.

Also, this may sound odd, but Jersey winters are dry and sometimes your face needs a reset, esp. since you are anxious about things. I would get a face/neck massage and keep everything moist after (consider a humidifier in the room where you are most often). I can easily reproduce much of what you are describing when my lips are chapped, and I have not washed my face. If I felt anxious, I could reproduce all of it.

Most of all, stop standing at the mirror and eying your face. If the compulsion persists, a therapist can help you work through it. These symptoms feed on themselves and since you do not have clinical weakness anywhere, you are in a good place compared to every patient here. So enjoy your kids this winter.

Best,
Laurie
 
Laurie,
Thank you for your thoughtful response. I'm so sorry for your loss.

I really was a very normal, functioning person before all this started. My husband has asked me to look into therapy. It's like this fear and anxiety have changed me in only three months.

It's funny that you mentioned chapped lips. It just got cold for the first time here this week and my lips are wildly chapped right now. I'm also home with a sick baby today so I've had more time than usual to stare at my face and obsess.

Thank you again for your calming words. This experience has been very lonely and to hear from people makes me feel less alone.
 
I don't understand why these posts are no longer simply deleted as the sticky so clearly says. The threads used to be merged but the sticky says the posts will be deleted.
 
I'm sorry for creating multiple threads. I did not realize I'd done so.
 
The rule has always been subject to moderator's discretion. Laurie and Mike, being nicer than I and having more energy, are more lenient
 
ahhh no one can be nicer than you Nikki!

The sticky says the following, which had seemed to me to have been clearly written to tell everyone that deletion is now automatic. Maybe the sticky needs to be clearer?

snip
Be considerate. I have been merging threads. I will no longer be doing this. It is a waste of my time. Going forward multiple threads for an undiagnosed dihals will be deleted. I have updated the sticky to say this will be the consequence. It always said no multiple threads and repeat offenders will be banned
snip

This is in the separate sticky about multiple threads being deleted.

I don't want to cause an issue I just get confused myself when things are stated, and then it seems it's not the case.

All the mods do a fab job, I'm just trying to keep track ;)
 
Aregs, I see you're still here, hoping for another opinion, perhaps.

Let me reassure you that you did not describe ALS at all whatsoever. Not a bit.

So that's what, now, two doctors and four people experienced with ALS who have told you that you don't have it.

I personally don't mean to be insulting, but you really need to go now, ignore ALS, and focus on finding out what is interfering with your life--I think it might be anxiety, but your doctor would know better, of course.
 
What you describe is nothing like my onset of bulbar ALS.
I am going to give some blunt advice. I have 3 small children. One is 10 months old. I am unlikely to see her turn 2. I *wish* more than anything that this was all a figment of my anxiety.

Go to your doctor. Tell them you have debilitating health anxiety. Get treated so that you can be an awesome parent to your kids.

Then, stop Dr Google. Trust me, with bulbar ALS people would be pointing out your weird speech.
 
Thank you to everyone who has taken the time to reply. You are correct that I need to get this under control. Thank you for your honesty.

I'm logging off now and I will not be posting again. Just wanted to let you know I've heard you.

You're all in my thoughts.
 
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