Old 02-20-2013, 09:06 PM #1
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Default Questions about possible bulbar onset

Have read a ton of different information on ALS. Probably best to get clarification from you all.

For the past year or so, I have experienced a lot of weird, unexplained, neurological symptoms. Started with muscle fasciulations all over. I'm pretty sure those were BFS, but just keep in mind that something wasn't neurologically "right"

Shortly thereafter i started experiencing problems with balance and perception. Felt like I weighed more, felt like I was being pulled down to the floor, felt like the floor was pushing me up as I walked, felt like some phantom was pushing me along as I walked. It has remained somewhat constant since October, hasn't really progressed, but hasn't gotten any better either. could the heaviness be because of muscle weakness in my legs? I've never lost the ability to walk, I don't have any foot drag, I can walk on my toes and heels etc....just feels weird.

Over the past 2 weeks I have begun having trouble swallowing. I will admit, the first incident was two weeks ago, and it seemed to go away until 2 days ago when it has really gotten noticeable. I can get the food in the back of my mouth, but there is hesitation to swallow. It feels like the muscles just dont want to work. I eventually get it down but it takes a while.

And now have started to notice subtle changes in my voice. I've been testing my voice by saying sentences out loud and have noticed difficulties. Im pretty good at speaking spanish but rolling my "r's" has become harder...

So to the questions:
-can you go from difficulty swallowing to the beginning of difficulty with speech in a few weeks?
- Were the issues with balance and muscle twitching in my extremities the beginning of limb onset ALS, but then it decided effect my swallowing simultaneously without having fully diminished my ability to use my limbs? In other words, how common is bulbar and limb onset simultaneously?
-Can balance problems in ALS come before muscle atrophy? Does the disease attack your balance center? Or is the reason for loss of balance due to muscle atrophy?

Thank you
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Old 02-20-2013, 09:35 PM #2
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Default Re: Questions about possible bulbar onset

What did your doctor say? You started having symptoms a year ago, so I'm thinking you must have had a consultation in that time?
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Old 02-20-2013, 10:01 PM #3
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Default Re: Questions about possible bulbar onset

Anxiety and acid reflux are issues to discuss with your doctor. Best of luck to you. BFS can be hard to accept and live with.

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Old 02-20-2013, 10:32 PM #4
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Default Re: Questions about possible bulbar onset

I've been screened for MS with an MRI but never have had an EMG. Doc thought it was completely preposterous for me to even think about ALS. He chopped it up to anxiety. Which is what I kind of lived with until this balance and swallowing stuff started happening. Does this sound like ALs to you?
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Old 02-21-2013, 08:59 AM #5
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Default Re: Questions about possible bulbar onset

It doesn't.
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Old 02-21-2013, 08:59 AM #6
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Default Re: Questions about possible bulbar onset

Quote:
Originally Posted by esjcollege08 View Post
I've been screened for MS with an MRI but never have had an EMG. Doc thought it was completely preposterous for me to even think about ALS. He chopped it up to anxiety. Which is what I kind of lived with until this balance and swallowing stuff started happening. Does this sound like ALs to you?
Your neuro consult is today? I'm betting you you do NOT have ALS. You are, I think, 22 and moreover your symptoms are inconsistent with the experiences of most PALS here, including me.

If you are told once again that you are suffering from anxiety, please seek medical attention ASAP to resolve it. There are many available options which will allow you to reclaim your life.
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Old 02-21-2013, 11:43 PM #7
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Default Re: Questions about possible bulbar onset

I am really starting to get scared. I went to my neuro today and he said my extremities looked fine, but my issue with swallowing he could not explain. I am set up to have an EMG soon. Meantime, I have looked at my tongue in the mirror (with my tongue at rest) and see it twitching and wiggling like people with ALS describe.

Do tongue fasciculations present prior to advanced bulbar function degeneration? In other words, can you have tongue fasciculations before you lose your ability to speak, chew etc? All I have is slight swallowing inability....

I'm really starting to think this could be bad news. Please help
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Old 02-22-2013, 08:33 AM #8
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Default Re: Questions about possible bulbar onset

We really can't help at this point. You need to let the neuro do his job. Fascis can be nothing to worry about at all--and there can be a ton of causes for swallowing issues--ALS one of the most rare.

Bulbar issues are normally first noted with speech issues
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