Old 10-30-2017, 01:04 AM #1 (permalink)
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Default Getting confusing info about ALS...please help

Hello,

I'm a 38 year old female. About a month ago I started experiencing body-wide twitching. Most of it is located in my back, but almost every part of my body has experienced some twitching. I also have a great deal of body-wide muscle pain, not cramping but just constant soreness (like I've been exercising constantly). Of course I googled my symptoms and I found out that twitching is often associated with ALS.

Upon further reading I learned that body-wide twitching is usually associated with benign fasciculation syndrome rather then ALS. However, I came across a post where someone mentioned having body-wide twitching and bulbar onset (slurred speech). I'm really confused at this point. I do not have any signs of slurred speech, but I do from once in a while swallow my tea the wrong way (Hence why I worry about bulbar onset with the ongoing twitching). I'm getting super anxious as you can imagine.

I should also mention that I've noticed tonight some tremors on my left hand (pinky and ring finger mostly). I had the "bright idea" of doing a wrist test for clonus and of course that made the tremors even more pronounced which of course made me fearful that I might have clonus. I feel like I'm spiralling out of my mind. I sometimes feel as if I might have some weakness in a hand, but then a few days later it goes away and another part of my body will feel weak. Which leads me to believe this is more a case of perceived weakness rather than real clinical weakness.

I guess what I'd like to ask those of you who have first hand experience of ALS is do my symptoms line up with your own experiences? How exactly does bulbar onset manifest itself? Does one start experiencing slurred speech first, then followed by dysphagia? Or does one start chocking on liquids first and the slurred speech appears later? About the chocking on liquids does it happen from time to time or is it more constant as an early sign of ALS...does one choke several times a day or is it more like once every few weeks? Does one's voice become more hoarse or is it more a change in the quality of the speech (clarity and rate)?

I've read the post on your site where it is mentioned that body-wide twitching is not usually how ALS presents itself, and that really made me a lot less anxious. So thank you in advance for all the awesome info you guys have provided.

Last edited by lgelb : 10-31-2017 at 02:20 PM Reason: paras
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Old 10-31-2017, 02:23 PM #2 (permalink)
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Default Re: Getting confusing info about ALS...please help

Nothing you have said would lead us to suspect ALS. But if you are concerned, see a physician who can test for clinical weakness [though as you say, we have no reason to suspect that, either] and assess you for any systemic disease. Absent signs of such disease, you will want to look to stress, sleep, diet/hydration, exercise, etc. as possible areas to work on, in order to feel better overall.

Best,
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Old 10-31-2017, 08:31 PM #3 (permalink)
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Default Re: Getting confusing info about ALS...please help

Thank you for taking the time to answer my question Igelb. I'm schedule for an EMG next month. Hopefully everything will turn out fine.
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Old 11-07-2017, 06:06 PM #4 (permalink)
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Default HELP! Bulbar onset worries

Hello all,

I've been experiencing some rather weird symptoms lately. I've started feeling as if the back of my tongue is getting heavier. The best way I can describe it is that it feels like when they spray your throat with an analgesic to freeze it and some gets on the back of your tongue, and it ends up feeling heavy and numb. It is not the whole tongue but rather a specific spot in the back of the tongue. I guess I'm worried about this because of the ongoing body-wide twitching I've had the past couple of months. My speech is not slurred and I'm not having any problems with swallowing food or liquids.

Are there any other symptoms that precede the slurred speech in Bulbar onset, like weird feelings on the tongue? Is this something that sounds worrisome to you when it comes to ALS?

Thanks in advance for all the feedbacks.
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Old 11-07-2017, 06:15 PM #5 (permalink)
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Default Re: Getting confusing info about ALS...please help

Mod note: merged threads. Jadzy, please continue posting in this thread.

I note you have mentioned being scheduled for an emg. Please come back once you've had that done and let us know how it went. Continuing to post before receiving proper medical attention and will not help diagnose you in any way. Laurie's answer above still stands with regards to your symptoms.
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Old 11-23-2017, 11:03 PM #6 (permalink)
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Default Not sure what to think anymore...please advise

Hello,

I'm a 38 year old woman who started having body-wide twitching about 2 months ago. I had my EMG done and it came back normal. However, the EMG was done on the right side of my body (leg and arm). I'm worried about bulbar onset, I feel like my voice is changing and becoming somewhat hyper nasal. I guess I'm wondering if an EMG done on the right side of the body would still come out normal in the presence of bulbar onset? Does the hyper nasality come with the slurred speech?

I would really appreciate any feedback on this. Thank you in advance.
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Old 11-23-2017, 11:10 PM #7 (permalink)
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Default Re: Getting confusing info about ALS...please help

Mod Note

This is the SECOND time you've been told to stay in one thread.

Continue to ignore the rules at your own risk.

And PLEASE quit talking about twitching!
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Old 11-23-2017, 11:13 PM #8 (permalink)
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Default Re: Getting confusing info about ALS...please help

My apologies, I'm not very familiar with forums. I didn't mean to ignore the rules.
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Old 11-23-2017, 11:50 PM #9 (permalink)
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Default Re: Getting confusing info about ALS...please help

The rules are posted at the top of the Do I Have ALS subforum, titled "READ BEFORE POSTING". The rules are listed there, as well as answers to your twitching questions.

Your best bet is to continue working with your doctor to find the source of your symptoms. Posting on a forum that focuses on a singular disease limits your ability to work out what is affecting your health. Don't ask your doctor if you have ALS- better to ask them what could be causing your symptoms.

You have been cleared of ALS, so this forum will not be of any use to you. This is excellent news.
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Old 11-23-2017, 11:57 PM #10 (permalink)
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Default Re: Getting confusing info about ALS...please help

Thank you for taking the time to reply to my question. I've read the stickies, but had a question about bulbar (as I'm a little confused about it). I will definitely take to heart your excellent suggestion.

Thank you again
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Old 11-24-2017, 12:32 AM #11 (permalink)
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Default Re: Getting confusing info about ALS...please help

You really need to talk about this with your doctor. You have been cleared of ALS. We heartily encourage those who have been cleared of ALS to move on. Continuing to research a disease that you have been told you do not have is problematic and contributes to health anxiety. If you have swallowing and voice issues, ask your doc for a referral to an ENT.
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Old 11-24-2017, 12:50 AM #12 (permalink)
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Default Re: Getting confusing info about ALS...please help

My swallowing issues went away, I think it had a lot to do with anxiety. I'm definitely having some issues with anxiety, since the neurologist thinks I have Benign fasciculation syndrome. I was asking the question about bulbar onset to quell my anxiety, since I find having reliable info is a source of reassurance for me. I find that there is a lot of misleading information about ALS on the internet, hence why I came on the forum. I read the stickies and they were super helpful. Some of the stuff I read online mentioned hyper nasality as being a symptom, and I was trying to ascertain if that is accurate or not. I'm trying to move on, and accurate information will help me do that...my imagination can easily run away with me I'm afraid. I really appreciate you taking the time to respond to me ShiftKicker, and giving some much needed advice. It means a lot. I've been referred to an ENT as well so hopefully that will help.
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Old 11-24-2017, 02:02 AM #13 (permalink)
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Default Re: Getting confusing info about ALS...please help

No more.

Jadzy, we know ALS pretty well, but we're not doctors, so we can't responsibly address anything else.

This is a forum for people dying of ALS.. You'll need to go elsewhere to address your other issues. Good luck.
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Old 11-24-2017, 02:56 AM #14 (permalink)
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Default Re: Getting confusing info about ALS...please help

Will do. Thank you again.
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Old 11-24-2017, 09:50 PM #15 (permalink)
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Default Re: Getting confusing info about ALS...please help

And to put a fork in it, thread closed

Good luck!
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