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pmlr

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PALS
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westport
I have had fasciculations for about three years but lately have been getting them more in my face and tongue. I also began choking on liquids at least once a day about two weeks ago. I went to my internist who said we need to rule out ALS. I am beyond terrified as I have three young children. Can anyone with Bulbar ALS tell me what your initial symptoms were? Can it start with swallowing or is it usually speech. My speech is okay for now. Thanks in advance for your support.
 

liz

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pmlr -

Re: how terrified you feel - if it's to the point where your fear is almost paralyzing (not eating, can't sleep, can't concentrate, extreme tension, etc.). Don't hesitate to ask for some sort of anti-anxiety medication. You might need, this is to help you think straight while you go through this process - just don't take so much you get dopey.

Since it's an internist and not a neurologist recommending the rule out for ALS, it may be too soon to panic - easier said than done I know. Push the doctors to schedule your appointment(s) for as soon as possible, so you don't have to put up with this anxiety and uncertainty any longer than necessary.

Good luck.

Liz
 

edna may

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PALS
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orange county
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laguna woods
Bulbae

pmlr said:
I have had fasciculations for about three years but lately have been getting them more in my face and tongue. I also began choking on liquids at least once a day about two weeks ago. I went to my internist who said we need to rule out ALS. I am beyond terrified as I have three young children. Can anyone with Bulbar ALS tell me what your initial symptoms were? Can it start with swallowing or is it usually speech. My speech is okay for now. Thanks in advance for your support.

I have bulbar, mine started in two places, & it was thought two separate problems trouble with my voice & fasciculation's of the tongue. & a left foot that felt strange & shoes not fitting properly. The mild symptoms were two years ago, a year later a diagnosed ALS, I have since lost my voice completely & wear a brace on the left leg & just starting with a wheel chair. I sincerely hope you do not have this, & that your symptoms are for another reason. wishing you all the best EM
 

anne

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ontario
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unionville
Hi PMLR: My mother has bulbar. Her's started with a hoarse voice and slight drooling which then progressed to swallowing problems. She now has a stiff neck. Can no longer speak and has a feeding tube. Her mobility and fine motor skills are still fine.
I wish you all the best. Anne
 

midwestgirl

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Loved one DX
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Hi! I can certainly understand how worried you are, but at this point it sounds like your internist wants to rule out ALS. I would make an appointment with a neurologist who specializes in ALS. My mother was diagnosed Dec 2006 with ALS - she started with foot drop in December 2005, but it progressed to Bulbar. Her first bulbar symptoms were nasal voice and slight slurring. She has dentures, and I thought her dentures needed realigning. She reminded me of when a child is first learning to talk - certain letters were hard for her. That was in March 2006, the swallowing issues didn't start until around September. By then her speech was getting much worse. Now she is very difficult to understand, and just had a feeding tube placed April 2. Everyone seems to progress so differently.
 

Jamiet

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Learn about ALS
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Louisiana
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Carencro
I hope you don't have it, but, the Mayo Clinic did a study, where people whom had muscle twitches for two years with no other symptoms and NONE of them developed ALS. There was like 200 people in the study.......So, the odds are on your side from the get go.

I would look at other things, like lyme disease, MG, Neuropathies. Esp, into this three years. I think most here will agree (although there are exceptions), that you should see something within a few months of the twitching, in which you didn't.

I would still get to an ALS clinic, just to rule it out, but it sounds as if you have a good internist...?

Good luck

rgds,

jamie
 
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