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glenn gavanaugh

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Feb 22, 2009
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Learn about ALS
Country
CA
State
ON
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Suburb of Toronto
there are a few things that have been happening lately (either for a while now, progressing... or new)

for one, my tongue: the back part looks like it's torn to shreds (the surface) with like dotted rips (hard to explain, pic needed...not actual "rips" but rips in the colouration) - I noticed this a couple of months ago, but now it's spreading - there are smaller dots/spots forming at the front of the tongue now too - I noticed this around the same time I noticed a funny feeling in my tongue, which could be twitching? it feels almost like my tongue has been dipped in a numbing agent w/ the feeling of tiny worms crawling over it- I know that numbness isn't associated with ALS, but this could be twitching. anyway, the feeling is there, it's a weird sensation to say the least.
I noticed problems projecting my voice a while ago. now it's worse. way worse. when I go to yell for my dog in the backyard, it feels so uncomfortable, like my tongue is vibrating (or my whole mouth), it's hard for me to do - my tongue feels weaker, and certain words are harder than others (but always with a lispy tone), I literally have to take more time to form them... this is not something I'm making up, it's real... I can't move my tongue has quickly as I could... I don't even want to yell anymore, it's so difficult and uncomfortable. I can bite quite a bit of my tongue on the one side, on the side of atrophy (hands arms neck legs) I can't bite nearly as much - this could be normal, but it's something to add.

also, my neck. the one side is smaller - it's weaker - tighter - uncomfortable
I'm getting more fascic's on the face, lip...
my gag reflex is getting worse.

when I breath in my chest feels tight, or like shortness of breath...the right side of my torso right under the rib cage feels like it sinks in when I sit down, really uncomfortable.

I've found myself getting more emotional than usual. Watching television, or reading something. Like a surge of emotion.

my mouth is as dry as a desert - especially at night, and when I wake up in the morning...

I wake up every day now with a numb arm - after about 5 hours of sleep - then I'll wake up every hour or so after that with numbness in whatever arm I'm sleeping on - sounds logical, but it's never occured before like this - every morning...

fingers on one hand more stiff and rigid harder to hold together or fold out completely - index finger curl, thumb curl - same feeling in the foot on same side - sometimes after walking, I begin to limp a little...

I noticed symptoms back in Dec 07 - could bulbar already be setting in? is that possible?

*a lot of this stuff I've been experiencing for a while, but thought that it was in my head, that it was unrelated, or too small of a problem at first - that's why I never mentioned it- this stuff isn't going away, it's only getting worse

thanks.
 
hi glenn.
there does seem to be something going on with what you have said.
you really need to see a neuro,they will be able to tell by looking at what you have described if it is something to be concerned about.
 
I also wanted to note that my babinski is still fine. the left foot toes go inward and the right foot is just neutral (doc said this is fine) . So still no UMN damage? Weird.
 
I agree with Caroline ... you should see a neuro and get his/her evaluation. It's possible for ALS to start with bulbar symptoms, but there are other conditions that also start with bulbar palsy. There is SO MUCH to be ruled out before you get to ALS.

I can identify with some of your symptoms, but not others. Since you have a well-developed talent for denial, as I do ( "thought that it was in my head, that it was unrelated, or too small of a problem at first - that's why I never mentioned it- this stuff isn't going away, it's only getting worse"), I would use that skill until you get some feedback from a neuro.

My own reasoning went like this:
-- Benign tongue fascics are 100x more common than ALS-related tongue fascics. I read this on the Internet so it must be true.
-- ALS is so incredibly rare and dramatic, that it is unlikely to happen to me. My mantra was (As Blanche DuBois said in"Streetcar Named Desire") "I shall probably die from eating an unwashed grape."
-- There are many more things that can cause bulbar palsy than ALS.
-- These neuros are all nuts. I feel fine.

I'm not being flippant ... a dose of denial can help ease your mind until you have a firm answer backed up by tests, clinical evaluations, etc. Some of your symptoms are suggestive, some point in other directions. Only a neuro (or two) can sort them out.

Hang in there and let us know what's happening.
 
thanks for the responses.

my symptoms actually started with my leg, about a year and 4 months ago.
the neuro I saw over a month ago told me that I do not have ALS. She seemed overly-confident about it. Chalked everything down to anxiety. I know that something is wrong with me - maybe not ALS, but we'll see. These bulbar problems are really scaring me, that's for sure.
EMG in 2 weeks. Hopefully in the long run it is not ALS. I'm sure the EMG will give a pretty good sign.
 
Glenn~

Yes, hand tight for that EMG! You will got some answers from that. How are your other clinicals?

best of wishes to you

April
 
everything else is fine. mri, ct, bloodwork.

i was just wondering. how often it is that a neuro says no to ALS and it ends up being ALS? Is this just as common as a neuro saying possibly ALS when it ends up not being so? because I'm p'd that she so easily threw the possibility out the window, when clearly my symptoms are getting worse (the tongue weakness, difficulty projecting voice, and dry mouth is freaking me out the most), and possibly point towards MND.
also what does a negative Babinski imply in spite of all this? I have atrophy, weakness, etc. but still, the Babinski is fine.
 
Glenn,

A positive babinski sign is an indication of upper motor neuron damage. The upper motor neurons are associated with fine motor control. When substantial UMN damage occurs the bodies "primitive" neurological responses, like the babinski sign and the startle reflex, reemerge. Babinski's sign occurs normally in infants because their nervous system is still developing.

Not exhibiting a postitive babinski's sign is good because it points away from UMN damage. A definitive ALS diagnosis requires clinical evidence of both upper and lower motor neuron damage that cannot be explained by another cause.

Take care,

Robert
 
Hi Glenn,
Unfortunately, doctors don't always listen like they should. My mom was misdiagnosed by her neuro simply because he didn't listen to her. He told her she'd had a stroke, and he was sure its not ALS. We knew it was not a stroke because that just didn't fit and made no sense. We were also pretty confident it was ALS because it runs in the family for us and her symptoms were spot on and progressing rapidly.

Two weeks after the stroke diagnosis she went back and said are you SURE it couldn't be ALS. He said no with ALS there'd be twitching. OMG HELLO! She had terrible twitching in her arm and told him so at that time and he said no you don't, felt her arm and replied, oh I guess you do. He also said well no because you'd be experiencing swallowing problems which was the FIRST thing she went to see a doctor for. He denied she'd even mentioned either of those symptoms which is positively ridiculous since they are two of three primary symptoms the only other was weakness. After finally HEARING she had those symptoms he said you better get to an ALS clinic.

I'd like to smack him. He wasted two months of a short life she had left to live. By the time she was actually diagnosed we were not able to do any of the things on her list of what she's always wanted to do in life. Not to mention, not ALL ALS patients have swallowing problems so I don't know why he even listed that as his ruling out criteria.

Sorry, I didn't mean to turn your thread into being about my mom, but there are lots of doctors who don't really listen to their patients. I don't know if its an arrogance thing or they are just too busy, I suppose there are many reasons. I hope you get a diagnosis soon because it sounds like something is going on. I will pray for you and keep you in my thoughts. Please update us.

Also, don't be afraid to be persistent and speak up to the doctors regarding your medical care. This is your life and they hold a lot of power in their hand, take some of that power and get results and the answers you need. Do you have someone to take you and help you? through this?
 
I'm so sorry about your Mom. That's terrible. I wish her neuro was more understanding.

My neuro simply said that I don't have ALS. That it's all anxiety. No stroke, tumour, MS, etc. Nothing. Anxiety. Yet I have muscle loss, weakness, cramps, stiffness (hand feels like it's turning to stone), finger curl, toe curl, neck weakness, tongue weakness, numbing sensations when waking up (probably not related), night drool, over-active gag reflex, etc. She said she's only seen a few people with ALS in her entire career, so. And that I was simply too young to get it (not true).

I also have brisk reflexes (which she said was again related to anxiety). Yet my Babinski is fine? That, I don't understand.

The EMG will shed light on all of this. So. I'm praying it could be something else, but fearing it's not.
 
Glenn,

I can't remmeber what the next step for you is? Where you waiting for an EMG, another specialist, or are you in "wait and see" mode? Maybe you can persuade your local neuro to let you see a neuromuscular specialist.

Best wishes,

Robert
 
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