Very scared

[Seg81]

Hi. I did read the ‘Read before posting’ thread but am in such a spiral and am hoping for an opinion.

I am 43F and have had muscle twitching all over that just came out of nowhere. I also have dry mouth and can’t pinpoint any cause of that. I had a family friend who had ALS and remember she complained of having a dry mouth before dx. So I am in panic and can’t function. I do have an appt with my pcp next week but just wanted to see if anyone has opinion on if this sounds like early signs

Thank you I am so scared

I’m sorry if it was insensitive to post such vague symptoms on this forum. But they are so strange to me and came out of nowhere. I am guilty of googling and driving myself crazy. I just feel so alone and don’t want to tell my family or friends anything so I felt I could come on here and at least get it off my chest.

I guess my only option is to wait and see and not think of worst case scenario .

Take care everyone

 

[lgelb]

I know of no correlation at onset but if you think about it, stress/anxiety can certainly lead to dry mouth, esp. if you don't keep up with hydration.

All-over twitching is a strong argument against ALS, and I expect your PCP will be reassuring. Do stop back by and let us know.

It is never wrong to reach out when you are scared. After the fact, there might be a family member or friend one day that could reach out to you for support, if they knew that you had been through this. So don't be afraid to share if you are ever so moved.

 

[Seg81]

Hi thank you very much for the response! I really, really appreciate it. I think anxiety is getting the best of me for sure and am hoping for some answers once I see my PCP. Thank you again and take care

 

[Seg81]

I saw my pcp this week and she did an exam and told me I need to hydrate and work on controlling anxiety. She also ordered blood work, and that all came back normal. I felt better for a few days, but am still concerned about the twitching. also, my tongue feels strange. I have a follow up in a month and don’t know if anything will improve (or get worse) by then. Not sure if I should ask if I can be referred to a neurologist? I’m also seeing a psychologist to talk through coping with anxiety. I feel like I will not be able to relax if this twitching continues, but is the anxiety causing more twitching..?!

 

[ShiftKicker]

Hi there-

You've received some great feedback already here, plus your doctor did not see anything to worry about. Your doctor would be able to tell you if they think you need to see a neuro for any reason at your follow up. You have had a clinical exam and your doctor will check again to assess for any changes when you go back again.

I am glad you are working with someone to address stress and anxiety levels in the meantime. One of the things we encourage people to do if they have been cleared of ALS but still feel afraid is to stop engaging here. While it might seem to make some sense to research and ask questions of people with ALS, it only feeds that cycle of anxiety, reassurance seeking, brief relief, anxiety, repeat. And, yes, the very long list of physical symptoms caused or amplified by anxiety includes twitching.

Please take care

 

[Seg81]

Thank you for the reply. I completely agree with you that I’m feeding the anxiety cycle because I read one thing and feel better, then read something else and start to spiral. I will stay away and work with my doctor. I truly appreciate your response. Take care

 

[Seg81]

Hello. I know I said I’d stay away but the twitching continues, and now I feel like my right hand is achy and feels colder than my other hand. So of course more panic has set in. Just curious if it’s possible that this is onset in my limb…. Seems quick, but I guess possible…. I have an appointment with a neurologist on Apr 2.

 

[ShiftKicker]

Hi there-

What are you doing to address your anxiety in the time between now and your neuro appointment? If the previous replies and all the information provided here already have not reassured you, do you think you might try another approach? It really does seem like you are scratching a reassurance itch here, and that's not really what the forum is all about. I refer you back to the "Read Before" and ask that you remember that sensory issues and twitching without clinical weakness do not indicate a concern for ALS.

Please let us know how your appointment goes with the neuro on Apr 2. I am sure you will be reassured.

All the best.

 

[Seg81]

Hello. Just wanted to come back and give an update…. I saw a Neuro on Wednesday, and he did an exam and did not find anything concerning. He couldn’t really explain why the muscle twitches/flutters are happening. They have slowed down, but I still have them. He said he could do a full work up (MRI, EMG etc), but he did not feel it was necessary, so I opted to not do any tests at this time.

Not knowing what is causing this still has me feeling anxious, but I am going to give it some time and see if anything changes.

I wanted to say a big thank you to the forum members who answered my posts. I truly appreciate you taking time to do that.

Please take care.

 

[lgelb]

Thank you for checking back in -- it does help others. If you focus on the things that make you happy and productive, that do not include thinking about twitches that a neurologist has not found concerning, your anxiety should be reduced as you go.

All the best.

 

[Seg81]

I’m sorry to be back here asking more questions…
I now have ear popping, and a pressure feeling in my head. I read some posts (bad idea, I know) that mentioned sinus issues at bulbar onset. I feel a pricking sensation behind my eye at times as well, and slight headaches. And the body wide twitching continues…. I want to run back to the neurologist but am not sure if I should…. I feel panic again

Not sure if this is all connected?

 

[ShiftKicker]

A neurologist is not the person to go for your anxiety. I think it's time you focused on that as it is very much affecting your day to day life. By all means visit with your gp to see if there's anything to be done for sinus issues, but to go straight to ALS because you have ear popping is a sure fire sign you've also got some pretty severe anxiety to work on.

I'll be closing this thread. Please consider blocking anything ALS related from your daily internet searches, because it's contributing to stress and it is unnecessary. You have been cleared of ALS quite thoroughly.

Take care