ALS concern.

[Confusedmomof2]

Thank you for taking a moment to read this and provide any insight .

I am 36 year old female . With 2 beautiful daughters - located in Canada

About a month ago I started having twitching in my left year . It was giving me headache and uncomfortable .
Then it progressed to my cheek and neck .
My hearing was tested and all tests were good .
My eye , lower eye lid has been twitching for 3 weeks now . Not effecting my vision but annoying .
And now I feel spasms in my throat and cracking voice .
Sometimes the spasms seem to come from back of neck . My shoulders are constantly tight and popping .

I don't have a family doctor . I am seeing a GI specialist for a barium swollen for esophagus spasms too - which started about 2 months Ago.

All of this has me very worried .

 

[Nikki J]

You need a gp. Everyone does. It may be hard to find one or have a wait to see one but that should be a priority. I lost my long time gp to retirement last year and really had to search for a new one and then wait months to be seen. difficulty finding a primary care is happening everywhere so you need to be persistent. If you have not yet tried this do so Find a doctor or nurse practitioner

twitching alone is meaningless and your description of spasms doesn’t seem like my or my family experience of ALS. A pcp and perhaps a physiotherapist are the things I would suggest seeking. Please fire Mr Google

 

[Confusedmomof2]

Thank you Nikki for the reply. I did mean to say my inner ear has been twitching . Which was the first thing that triggered my fear . Then the face, neck and throat spasms - and now the cracking hoarse voice .

My GP also retired sadly and no one has come on to replace him.

 

[ShiftKicker]

Nikki points out you can see a nurse practitioner too. Ontario has a system that includes NPs (my sister in law is one) and they are absolutely appropriate for health management, meds and referrals to specialists, should they be needed. It might be hard to find one, or take a while to get a first appointment, but it's important to start the process.

 

[Confusedmomof2]

Thank you ladies. I called today and got in with a family doctor - my first appointment is in 3 weeks .
I also had my colonoscopy and endoscopy today and they said it all looked normal except spasms in my throat and colon on internal observation.
My spasms are as follows now :
Throat spasms , under eye twitching , back of neck twitching , jaw spasms , and inner ear twitching .
My fear is bulbar onset als - and I'm really struggling with letting this go . Especially not with the colon and throat spasms being identified by the gastroenterologist.

Any insight

 

[ShiftKicker]

I think it's super important for you to seek proper medical care instead of looking for answers online. I understand the compulsion, but there is absolutely nothing we can do for you here aside from provide the "Read Before" link and recommend you get the ball rolling with regards to seeking primary care either via an NP or GP. You need a clinical exam and someone to take your medical history- which will then guide their line of inquiry.

Colon spasms are not something that would make a doctor hop to ALS. Not sure what it might be (surely a gastro would be the person to know) though.

*edited to acknowledge, you've found someone. 3 weeks wait is actually pretty good.

 

[affected]

My husband was bulbar onset and had nothing like this happen.
You can spend the next few weeks now getting a good diet, looking at your sleep, mindfulness, exercise and hydration. All these things will help a lot no matter what is found to be going on.

 

[Confusedmomof2]

I wanted to tell you I appreciated your responses and give you and update .

I saw a neurologist today - in the ER since my anxiety was high.
He did a full physical neurological work up and said he sees no signs that point to ALS.
He agreed to do an EMG for peace of mind but feels confidence it won't show anything and he is doing it for peace of mind.
I am trying to let his words act as reassurance but so far it has not .

Thanks again for responding and taking the time to care about people in this forum.

 

[Nikki J]

Ask yourself if you will believe the emg since not even the neurologist reassured you. We see it here often. A kind doctor orders an emg for peace of mind. It comes back fine. The person then starts questioning too soon? Wrong muscles? Wasn’t done right? None of which are the case but their worried mind tells them lies. If you go forward with the emg don’t be that person

 

[Clearwater AL]

Yes, a kind doctor will order an EMG for patient peace of mind. But... as I have written before...
An EMG is an expensive test and it is profit based. No neuro facility performs tests (EMGs) at
break even or much less a loss. For them... do the EMG. Why not... if it will be paid for.

Confused... can you say to yourself now you will accept the results and post the Summary/Conclusion?

 

[affected]

I'm so sorry you are still so highly anxious and I doubt that any doctor, EMG or us will make any difference.
You can in fact be helped if you will be open to it by talking frankly with your doctor.

 

[MupstateNY]

Many people find themselves anxious when their body starts doing strange things.

Today in my therapy session my therapist taught me something to do to calm down when I have a cough attack or can't catch my breath or have sticky mucus that I have trouble getting out or when a tablet gets stuck on its way down and I can't get it up and I can't get it down. He said that direct contact with someone in my family, such as my son holding my hand, or even me crossing my arms and giving myself a quasi-hug, rubbing my crossed hands up and down on my shoulders and upper arms, will help my body release oxytocin, the hormone that relaxes one. He pointed out that if I can calm the anxiety, the breathing or swallowing crisis will lessen. It's true!

ALS, whether one has it or not, can be a very worrying thought. It is natural to feel anxious when something weird is happening with one's body.

I hope it isn't ALS in your case. But note that someone with early ALS almost never gets a quick diagnosis. One has to spend months in limbo, because one of the things the neurologist will look for is progression of symptoms and also in the EMG and nerve conduction studies. Hopefully someone will figure out what's going on with you soon. However, if your EMG is in a gray zone, you will either learn to live with the uncertainty, or drive yourself nuts. I hope it's not in a gray zone to begin with, and I hope that if it is, you find some peace with the uncertainty.

Note that many, many people with no neurological problems have a tic in their eyelid. I don't know anything about the other things you've observed.

What might help you is to try to be a role model for your children, so they can learn from you how to find some equanimity when they are waiting to hear back from their college applications. (I know it's hard.)

Regards.

 

[Confusedmomof2]

Thank you again for the replies and support . I do believe that the EMG will put my mind at ease, and I will for sure share the results if that is something appropriate to do. Maybe it can help others either way?! It is scheduled for end of march.

In the meantime I am going to focus on working on my anxiety and reducing my stress/ accepting uncertainty . Tho part of me knows I should be reassured by a clear neurology assessment - I clearly am struggling mentally with this.

My eye twitch seems to have calmed down since my neurology appointment - so I am wondering if the inner ear twitching , and throat spasms could be anxiety related too. The hoarse voice is what causes my most anxiety about ALS .

Again, thank you for your replies.

 

[Clearwater AL]

Confused, here it is... " It is scheduled for end of march."

"In the meantime I am going to focus on working on my anxiety and reducing my stress/ accepting uncertainty."

My opinion, the most helpful thing you can do to lessen your Health Anxiety/stress is... don't linger on this
site reading old threads, try hard to avoid Dr. Google. Also try hard to stop thinking ALS.

The symptoms you have posted really point away from ALS. As Affected told you her husband was Bulbar
and had nothing like this happen. See your doctor for anymore questions you may have. There isn't
much more that can be answered here.

Hope you find some sense of peace until March. If by chance your doctors can help to a point where
you may actually consider canceling the EMG.

 

[affected]

Truly, you don't leap from a hoarse voice to dying unless you have some very real underlying anxiety.
It doesn't mean a hoarse voice means nothing sinister, but truly, not to that degree. It is like saying I must have a brain tumour because I have a headache.
If you can't let go of your fears while waiting, please either see a doctor or join an anxiety forum as we can't do anything more until you show us your EMG results.
I'm really glad you intend to work on your mental health while waiting because this is the best thing you can do no matter what final diagnostic results you get on any physical issue. All the very best.