Old 02-18-2013, 07:13 PM #1
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Default I thought I put my ALS fears to rest

Hello all,

It was about a year ago when I first posted here, and I thought I had put my ALS fears to rest with all the wonderful insight I gained here.

I have to say though, I've had continuing neurological symptoms over this past year, and now the latest symptoms really has me concerned. Would appreciate some insight.

When I first came here, I posted the same symptom so many others do (muscle twitching, numbness etc). I would get bouts of muscle fasciulations on the left side of my body. From my ears to my thighs, but always the left side. The fact that it was widespread and not localized put ALS fears to rest for me. mRI ruled out MS, so doctors weren't sure what was going on.

As this year has gone on, the muscle twitching remains and now I have trouble with perception. It feels like gravity is intensified x10, it feels like someone is pulling me to the ground, it feels like the floor is pushing back up against my feet etc. just a lot of weird perceptual disturbances. I can't tell if I feel heavier because of muscle weakness in my legs, or if something is wrong with my vestibular system. My ENT doctor did a bunch of tests on my ears, and they're perfectly fine.

Over the past 2 weeks, I have begun to have problems swallowing food. I've nearly choked twice and find it difficult to even swallow my own saliva. It just feels like the muscles stop working.

The balance thing has brief periods of remission, but it's with me most of the time. I first choked 2 weeks ago and it started acting up again today. Cant even finish my dinner.

I see my 5th neurologist this Thursday and will ask him what's up. I have not seen a neuro since the balance and swallowing symptoms. Ideas on what this could be? I'm praying it's not what I think it is. I'm only 22 yr old male.

Thank you
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Old 02-18-2013, 07:19 PM #2
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Default Re: I thought I put my ALS fears to rest

I would wait to see the doctor and in the mean time I would relax. The anxxiety and stress could be making things worse. Worry and fear won't change the outcome good or bad and you won't get that time spent worrying back. Listen to the doc and stop worrying over it. I wish you peace.
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Old 02-19-2013, 11:17 AM #3
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Default Re: I thought I put my ALS fears to rest

I have the same feelings of someone pulling me to the ground and the floor pushing back against my feet....I have also the feeling that the floor is moving. My neuro said are feelings related to balance problems. Do you also feel it's hard to walk for a long time? Try not to worry too much and wait for the neuro appointment....I'm still undiagnosed too with a lot of symptoms. good luck
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Old 02-19-2013, 01:25 PM #4
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Default Re: I thought I put my ALS fears to rest

It's not with me at all times...it seems to build up throughout the day. The only weird thing about it is that it came on so suddenly. I was at a dinner banquet, standing up for a while, and all of a sudden i leaned back in my stance and it felt like gravity was intensified. And i mean suddenly. At first I thought I had a stroke in my cerebellum or something, but MRI was clean.

It's a very weird sensation. It feels like someone pushes me along while I walk, it feels like someone is pulling me to the ground, and it feels like the floor is moving/pushing up against my feet. Very frightening. Docs all say it's "dizziness," but I know theyre wrong. dizziness is spinning around a bunch of times and trying to walk in a straight line....that's not what Im experiencing at all. I dont know if this is a symptom of ALS...what I do know is that I have good days, and I have really bad days...which is not characteristic of ALS.

However this new problem with swallowing has brought all the fears of ALS rushing back. Maybe my entire nervous system is under attack, and I'm experiencing all sorts of weird stuff from this disease. Thursday can't come fast enough. Im going to have an EMG, nerve conduction study, swallow test etc...and I'm praying to God I'm okay.

I will let you know how it goes.
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Old 02-19-2013, 08:44 PM #5
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Default Re: I thought I put my ALS fears to rest

Swallowing issues in ALS usually start with thin liquids, not food. Usually friends or family notice a change in your speech (before you do) and may wonder if you've been drinking.

Although not unheard of at your age, ALS is a very rare disease and it's even more rare in someone your age.
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Old 02-20-2013, 01:34 AM #6
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Default Re: I thought I put my ALS fears to rest

Thank you for your reply. I too have read that people usually experience problems with speech and liquids, but my trouble with swallowing, combined with the balance issues and the muscle fasciulations all add up to a less than ideal outlook in my mind. I could be wrong, and I hope I am, but no doctor has been able to explain what's been going on to me this entire past year. My body has been telling me something is wrong. First it was the fasciulations, Now my balance and swallowing are off... maybe my entire nervous system is under attack? Not every person follows the disease by the books. And then again, maybe I'm perfectly fine. I really can't tell, but if anyone else were in my body, they would say something isn't right.

What are the chances of a 22year old male developing bulbar onset ALS?
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Old 02-20-2013, 01:47 AM #7
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Default Re: I thought I put my ALS fears to rest

The chances are very very slim. You would probably be more likely to win a hundred thousand dollars in the lottery. Seeing that many neuroligists In a year is remarkable. You must have good insurance.
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Old 02-20-2013, 02:03 AM #8
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Default Re: I thought I put my ALS fears to rest

At the end of 2012 I had gone over my out of pocket limit so I was 100% covered. I also moved to Portland so I got a see one up here already. But I finally got an appointment wat OHSU neurology this Thursday. When I scheduled the appointment, it was originally just to get a second opinion on the balance issue. The swallowing has come up in the past 2 weeks and has really started becoming noticeable only yesterday. So it's kind of good timing I guess. I hope they can give me some answers.
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