Could this be Als?

[Mamaworry]

Hello all
Thanks for letting me join the forum and for your time in reading.
I will try and keep this as brief as possible as I don't want to ramble on.
My worries started in November last year. Started with twitching muscles in legs, arms, tummy, feet. Saw a neurologist at end of January and he wasn't concerned. Since end of.march this year I have noticed that my speech is a bit odd in that I am getting words muddled and they just don't sound right. Went to see same neurologist who I saw on Weds who examined me thoroughly and listened to my speech and said I was fine. He noticed no clinical weakness or anything else.
But since I saw him I have had shortness of breath, like I cannot get enough air into my lungs and end up doing a big sigh or a yawn to get the breath, this has come on suddenly and not sure if its anxiety. Also when I was talking to my daughter last night the words came out as a whisper and I'm worrying that my voice is failing and its bulbar onset. So now I can't go back to neurologist now he's signed me off and I'm worried I have als. I also tripped over yesterday but over a misplaced item. I have to say I do have severe health anxiety so tend to get extremely anxious and am having help for this.
Many thanks

 

[affected]

I am sure this is all very alarming for you.
You are so right however, these are all symptoms of severe health anxiety and not symptoms of ALS.
See your doctor, get examined thoroughly so they can help you in the best way. I do wish you the very best. Please understand none of this is how ALS happens.

 

[Mamaworry]

Hi Affected
Many thanks for your speedy reply. It is very much appreciated of you.
Im currently working with my gp and have a mental health team and phychologist but it's early days.
I saw my neurologist with a long list of symptoms and one that I forgot to mention here was a tightness in the throat. I think I've put that together with my speech and the one off whisper last night and have worried myself. And also neurologist has said all my symptoms are not als.
It's just that the breathing worries me as I have also read that people do have breathing difficulty in that they can't get a breath and have to yawn, plus my whisper last night. The twitching is ongoing still and that's been 7 and a half months, get it in legs, neck, face which is bothering me too. Again told neurologist all this and he said twitching without weakness is nothing.
Sorry to rant on, it's been a horrid time and I just want to be able to move on with things.
I truly appreciate your time

 

[affected]

Throat tightness isn't a symptom of ALS either.
Did you read this post carefully? It addresses your concerns but is long and complex so reading twice is really helpful.
It is totally correct, twitching on its own means absolutely nothing, yet people fixate on it.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

I'm not saying there is nothing going on, just that this isn't how ALS presents at all, so we can't say more than that. I hope your doctors can sort things with you.

 

[Clearwater AL]

Mamawory., you wrote it....

"Went to see same neurologist who I saw on Weds who examined me thoroughly
and listened to my speech and said I was fine."

"And also neurologist has said all my symptoms are not ALS."

*Key words: "... all my symptoms are not ALS." Power word: Neurologist.

"Again told neurologist all this and he said twitching without weakness is nothing."

Mama... let ALS go and do move on. AND... let this Forum go. You do not have ALS.

 

[lgelb]

Mama, everything you describe is typical for someone who is under a lot of stress and/or not getting enough uninterrupted sleep. I would suggest that you evaluate how you can address those. I would also ensure that your GP has ruled out heart and lung issues from causes other than ALS.

Best,
Laurie

 

[Mamaworry]

Hello all
I want to thank you for taking the time to reply to me, you are all very kind.
I would just like to ask a few more things before I leave this helpful forum, if that's OK.

As I've said I've seen the neurologist last week and he had no concerns. Since I've seen him I have had this issue in not being able to get a deep breath and when I do I have to do a big sigh or a yawn, was OK all day yesterday until the evening when it came on and is here while typing this out.

Also I have had right shoulder pain and when drifting off to sleep my shoulder jerks/twitches. Are these anything to be concerned over and can any of you relate, I have been reading that shoulder issues can be early onset als and the breathing could be respiratory onset, but also read that's rare. I also woke up and had been drooling in my sleep, but then I'm sure that's normal.

I have read the sticky over and over too and that doesn't mention about breathing issues. I have called my gp and waiting for a call back. The neurologist checked my breathing by placing his hand on my diaghragm and that was OK but these other things have happened since that appointment.

Once again thank you for helping me out and reading my posts. You are dealing with a lot of things yourselves and are kind enough to help others and me with our concerns.
Take care.

 

[Nikki J]

Nothing you have written sounds concerning for ALS. Shoulder pain jerks when falling asleep the yawn/ sigh. None of it. Believe your neurologist

good luck!

 

[Mamaworry]

Hi nikki
Thanks so much for replying, I really do appreciate your time.
On one last note, I've mentioned I've been twitching for nearly 8 months now and I know that without weakness it means nothing, but have had a twitch on my lips today and in the past, would that be anything to worry about too? I do suffer with severe health anxiety and ocd so am anxious which I am getting help with.
Once again thanks for the reply.
Take care

 

[Bestfriends14]

Mama, could you please stop piling on your non-ALS symptoms with every post? You do not have this disease, yet are expecting those dying of it to hand-hold you through your health anxiety. That's pretty cruel if you ask me. I think it is about time, for your own mental well-being, to move on from this site. Keep working with your counselor and taking anxiety meds.; you will get much further in terms of feeling better than you will hanging around a site for those who are dying from this monster of a disease.

Please take care and stay safe. Good luck to you.

 

[Clearwater AL]

Mamaworry, I'm known to be blunt.... one more post from you and in my opinion
you are just taunting the good, extremely ALS knowledgeable people of this
Forum.

You do not have ALS.

This is not an anxiety forum. Please find one if you feel you have to keep telling
others (strangers) your woes.

 

[Mamaworry]

Hi all
I apologise for my posts and if they have offended you, it was not my intention at all, just asking for your opinions that was all. It must be frustrating for you to read through all the posts in this sub forum.
I did forget to mention that since December, when I am waking up I have an involuntary swallow that makes me jump, it's not a normal swallow and now I am concerned that this is a twitch or facsiculation in my throat and this is why its happening. This doesn't happen during the day, just when I am waking up.
Again I have told neurologist this and he said it was not als/mnd.
I have seen my gp about this too before I saw neurologist and he said he hadn't heard of anything like this.
I have read through some posts about involuntary swallowing that seem similar to what is happening with me and I am just concerned.
I will add I am getting help with my anxiety and seeing mental health specialists.
Once again I do apologise for asking just one more thing, but just want your advice as to whether this swallowing is something to be concerned about.
Thanks all and take care

 

[Nikki J]

No don’t worry

keep working with your mental health specialists

i am closing this thread. Do not start another. I strongly suggest you block this and all ALS related sites. Good luck