ALS concern.

[Confusedmomof2]

Hi affected .
You are right that is a big jump! I liked your correlation to the head ache .

But , last night I went to a walk in clinic for yet another suspected ear infection. But the clinic doc said she could see my soft palate spasming - and she guessed by my voice and throat, my laryngitis might be Associated with the spasms I feel too.

So my questions -
1. Are soft palate spasms familiar with bulbar ?

2. Do the voice issues come and go with bulbar. When my throat feels like it spasms my voice seems more hoarse and deep then when it's relaxed .

3 . I generally don't feel these symptoms sleeping .

4. I hear a clicking when I swallow in my ears and throat .

4. Should I call the neurologist back to tell him the findings of the walk in clinic doc , or still wait for march?

ps. I did have another ear infection. 5 in the last 2 months now ..

Sorry to be writing here again, as I said - I am very confused and concerned

 

[affected]

Nope, you don't need to jump straight back to ALS every time something happens.
You should go see your regular doctor and maybe you will be sent to an ENT if there are concerns.

To be specific on your questions.
1. No, but really common with ear infections
2. no
3. not a question
4. not a question but no not red flagging ALS at all
5. no, talk to your PCP
Hope that helps

 

[Clearwater AL]

Confused... "Should I call the neurologist back to tell him the findings of the walk in clinic doc."

That is up to you... not us.

Affected has covered your concerns.

For now, until you call your Neuro or wait till March, as for here... your situation is on hold.

 

[Confusedmomof2]

Hi affected and Clearwater . I found myself worrying about my tongue twitching I felt today .
So after some research( yes I know, bad googling) I came across a couple articles I thought might have some information that could help some others .

Would it be appropriate to share them for that sake? It was written by a neurologist-

A few notable quotes from the neurologist :
1. Focus on what your tongue can do. Not what it looks like or if it is twitching .
If you can swallow , speak, eat , and breath normally , those are important points
2. 99 percent of Bulbar onset patients do not feel their tongue fascinations and tongue fascinations are very rarely ever the first symptom- there would be seen weakness / atrophy / speech issues first .

I hope I am not spreading misinformation - but helpful information for others .

Hopefully myself too - because I am adding weird tongue feeling / twitching to my ever growing ( daily!!! ) list!

 

[MupstateNY]

I saw several things on your list that looked like it might be helpful to see an ENT. Also note that an ENT gave me a Protonix prescription ("operating on a GERD hypothesis") several months ago and it's been helping a LOT with my hoarseness.

Sometimes it is possible to get an earlier appt for EMG and/or ENT by going to a different town -- at least where I live.

I found that working with a clinical social worker was very helpful for me while I was being evaluated for ALS. The uncertainty was very hard on me. The therapy appointments helped me a lot.

 

[Confusedmomof2]

I was on the cancellation list - and my EMG got bumped up to tomorrow !!! I'm insanely nervous and don't know what to expect : do you find out results immediately ? Is it incredibly painful? Any information someone can provide for expectations

 

[ShiftKicker]

It depends on who is doing the EMG. If it's your neurologist, you may get the results immediately. If it's someone else, they will send the report to the requisitioning doctor, who will then convey the results to you. You would be better off communicating with your neuro/doctor about when to expect results.

EMG exams can be uncomfortable for some, absolutely fine for others. It really depends on how extensive it is and how you respond to stimulus and the technique of the person doing the examination. It's subjective.

Please let us know how it goes. Take care

 

[affected]

Good luck, let us know the results when you have them

 

[Confusedmomof2]

Hello. I just finished .
They did a nerve test first and all was perfect they said .
Then they tested both arms , legs , my throat muscles on both sides, and my tongue with EMG . They said everything was clear.

He is going to send me for an MRI too . To rule out anything else .

I assume all of this means I am clear from ALS fears? Because the test could not be done too early right?

 

[affected]

Great news!
Correct, no clinical findings and clean EMG - whatever is going on is not ALS. Can't be done too early.
Your doctor is following a good diagnostic path. All the best.

 

[Clearwater AL]

Confused... there is no more room for doubt or questions. Great news.

Now, do yourself a great big favor... sign off this site for good.

Work with your doctors finding the path to a long and happy life.

 

[Confusedmomof2]

I was doing so good - totally relieved - and then food came out my nose twice this week and I'm wondering if my EMG was done too soon! Or missed something . My eye is still twitching too.
They did test my tongue , my arms and legs - and said everything is good - but I'm doubting now that maybe my symptoms weren't far ahead enough?

Does this make me sound crazy? Or any truth to this?? Feel free to be blunt with me if I'm missing the mark here again.

 

[ShiftKicker]

Hi there-

Repeatedly seeking reassurance here is a sure sign you are struggling with health anxiety. It's like an itch you need to scratch and you are using this forum to seek relief instead of addressing the anxiety itself. It's time to find a more appropriate type of support- either in person with a counselor or on one of the many sites that have thriving peer support communities. NoMorePanic is a good one, and there are groups on FB as well.

I will be closing this thread. Please do not open another.

Please take care of yourself. Hopefully you will be able to leave ALS behind and find the support you need in a more appropriate community.