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Becca15

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As from my last posts: my symptoms have progressed rapidly. I have atrophy in my cheek now, it's been spasming for ages. I've also got twitching in my ribs as well as bodywide. My abdomen feels like it's got aliens in it and I'm struggling for breath on a night. I also have atrophy in the top of my left foot where I have a numb spot. My voice is going. Been referred to a neuromuscular specialist. My doc thinks it's bulbar MND as I've had everything else ruled out. I'm 40 with 4 children 💔💔💔
I've also been told that numbness CAN happen in MND.
 

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Hi Becca, I've moved your post to your already open thread. It helps people to see all that has been discussed in a single place.
 

Becca15

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Because I now have atrophy and many people i have spoken to with bulbar onset have had clean EMG's in the early stages when they had just twitching. Mine is rapid progression. My voice is going too. I'm heartbroken. I feel like I have snakes in my abdomen 💔💔💔
 

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Still not describing ALS at all. Who are these "many people" you have talked to with Bulbar onset? Considering ALS is very rare, and bulbar onset even more rare, I'm surprised you know so many people who are bulbar onset.

Please report back after your second clean EMG as there is not much folks here can do for you as you're not presenting with ALS onset symptoms.

Until then, do take care.
 
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I'm so sorry Becca, never, ever heard of what you describe as being ALS of any onset, particularly not Bulbar onset.
Please, just work with your doctors, your anxiety is very high and I hope they are helping you with that. The rapid progression you describe is progression of anxiety, not of failures of muscles. Please, stop a bit and get help for this anxiety as no matter what is going on, you are obviously in a lot of distress.
As suggested, come back to tell us the results once you see the neuromuscular specialist, I truly hope they can put this to rest for you.
 

Clearwater AL

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Becca, you joined June 15th, I’m sure you have read many Threads and posts.
Within them I’m sure you noticed our position on posting
pictures (well, it used to be… I’ll give you that) yet you posted a
picture. No one here is going to make any determination (or shouldn’t).
In your picture your right arm is up, your left arm is down, I can tell
by the picture. That is creating something that does not exist.

Your Thread has now gone off for two pages. How many times does
it take you’ve been told your case does not indicate ALS?

From anything forward it is up to your doctors… not here.

The ball is no longer in our court... it's entirely in the court of the
neuromuscular specialist.

As said once above... until then. You'll most likely get great news it's
not ALS. If you accept and believe. I hope it's something treatable,
and even more curable, so you can go on with your life which many
here don't.
 
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Becca15

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The people I've spoken to are on the bulbar onset fb support page have had several clean EMG's prior to diagnosis. I've also been on the BFS support page and my symptoms are not BFS. So are you saying that the following symptoms are not signs of ALS

1. bodywide twitching
2. Spasticity in face (cheek) followed by shrinking in right cheek
3. Fingers stiff
4. Abdominal twitching and spasms
5. Voice changes
6. Saliva problems
7. Muscle cramps
8. Numbness and atrophy on top of foot
9. Problems chewing
10. High neutrophil count
11. Face buzzing
12. Body vibrating
13. Bodywide muscle aches
14. Shoulder keeps locking

they've ruled everything else out and my symptoms have rapidly progressed over the past couple of months. I really didn't think anxiety could cause muscle atrophy noted by my physician.
I'm praying it's not ALS, it's the last thing I want. I have young children. It's obvious the above symptoms are causing me to be anxious. It's not the other way around. I came on here for support, not to be told it's my anxiety and not for my symptoms to be dismissed like this. I've been tested for lymes, MG, ms and a host of other things.

I could cry.
 

Becca15

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I forgot to mention brisk reflexes legs, no plantar reflex. Absent reflexes in arms
 

Clearwater AL

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Becca, enough. I've watching you on line looking at countless old threads and posts

You started an initial thread followed by 12 "Could" posts. Again, you've gone on
for two pages adding more and more. You've had several clean EMGs (your own
words). You've had very ALS knowledgeable members tell you something you
refuse to accept.

" It's obvious the above symptoms are causing me to be anxious."

Then...

"I came on here for support, not to be told it's my anxiety and not for my symptoms."
We can't support something you don't have or hold you hand through 12 posts.

Again, the ball is no longer in our court... it's in the neuromuscular specialist.
Read my last paragraph in my reply above.

"I have young children."
Your pursuit of a terminal disease you do not have is not caring and loving them
like you should..

You have serious Health Anxiety which will interfere with a healthy and loving
relationship with your children.

Until then...
 
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Bestfriends14

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Becca, it's sad to see that not only are you here posting again and again and again your non ALS symptoms, yet you are also on other sites badgering other terminally ill folks. I will say, I find it interesting, and rather inappropriate, that you are a part of a fb group that only allows PALS and CALS.

Please, have some respect. Not only is it cruel, it's incredibly self-absorbed to demand dying people to hand hold you through your anxiety. You don't have ALS because you just don't. You won't believe anyone here, you think you know more than neuromuscular doctors, and you argue about your non-ALS symptoms. What else is there really to tell you but to pursue a hobby or focus more on your children. Currently, your focus on a disease you don't have is only taking time away from what you should be focusing on-your children.

I sincerely wish you the best but please, move on from this website and leave dying people and there caregivers alone. Please.
 

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Becca, one more clarification and I'll close the thread. Please do not start another.

The long list of symptoms you listed -- some of them can be seen in ALS, that's true. ALL of them can also be seen in hundreds of other conditions, including health anxiety. So NONE of these are a red flag for ALS, even in combination. Neurologists look at your full health history, pattern of onset, EMG and exams, not lists of symptoms, to make a diagnosis like ALS.

Please seek counseling for your health anxiety, for yourself and your family.

Best,
Laurie
 
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