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AMC123

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Learn about ALS
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Fresno
Ive had twitching on and off since mid-March. Stiffness and fatigue in both legs and left arm. Now I've noticed that my uvula is crooked towards the right, like a "C" and the right side of my tongue in the back towards the throat is much, MUCH lower than the left. When I yawn, it's ALWAYS incomplete yawn and ends up being more of a sigh. When I swallow, sometimes things go up into my left nostril and makes me sneeze. My twitching started in the middle of the night and it was wide spread from the start, but now mostly resides in my calves. Lots of shaking, lots of vibrating. I have pre-charlie horses which come and go; so do the muscle fatigue. I have had two clean EMGS, but not thorough.

My questions are, can you have limbs onset & bulbar issues at the same time in such a short period of time.

Does this sound at ALL like ALS?

And will an EMG pick up issues with ALS, even if the bulbar regions weren't tested?


And yes, i read all the stickies. Some more than twice. I just didn't get the answers I was looking for. Any feed back is appreciated.
 
As a wise man once said, "Quit making your tongue do things its not meant to do!" Your body is not equal on both sides. So there's a great possibility your tongue and uvula have always been on the crooked side.

As for the other symp toms, if you had read the stickies, you would know and understand that twi tches are NOT a precursor to ALS. They are the end signs of life in a muscle. And yes, the EMG, even if they were not thorough, will show up any denervation as well as reinervation. And unless you are suffering from Munchausen's, I would never want to have the bulbar EMG done.

ALS does not come and go. Once here, it only gets harder to perform the task at hand. It is possible to have limb onset coinciding with bulbar, but you have NO symp toms of either. Apparently, you are having trust issues with your doc tor. Important lesson, trust him over doc tor go og le or for ums about ALS.

Move on with your life and forget about ALS,
 
Thanks for the replies. Ive heard pals say that fascics can come first and ive read others say the opposite. Im not so much worried about the fascic as I am the other stuff because as you said, fascics arent much of an indicator of anything. Its the other junk I worry about. I trust my nuero as he is one of the best ALS specialists in the country. I just wonder if I got my emgs too early. Im going to my gp monday; do you think a regular old gp would be able to tell if the stuff going on in my mouth is atrophy?
 
Unfortunately you are contradicting yourself whenever you post. On the one hand you claim the emgs weren't done properly but on the other hand claim that your neuro is one of the best ALS specialists in the country. I think it's safe to assume that one of the best ALS specialists in the country is eminently capable of judging the quality of emgs, and yet you want us to believe that you know better than s/he does.

Reading between the lines it looks likely that the specialist told you that you do not have ALS and you don't like that judgement so you are scrabbling around trying to find some other "symptoms" to justify your obsession...
 
You cannot have a diagnosis of ALS with a clean EMG
 
No, thats not true. I never said anything about my neuro reading anything wrong. I said I was wondering if it was too early for symptoms to show on an emg. I had only had them (symptoms) for a month before emg. As far as checking for stuff, I didnt look in my mouth until junk like food and water started coming through my nose. I think the emgs were done properly by all means. They just werent done everywhere meaning left arm and leg. Thats all. I question the time frame, not my nuero. I loved my specialist !
 
The EMG can pick up changes even before you are physically aware of them
 
Where were the EMGs done... I'm assuming on your legs. If there was any als issues, it would pick it up in this test probably a year before any cramping, twitching or atrophy.

I don't have any experience with Bulbar onset, but from what I've learned, it's a problem with liquids going down, not coming up through your nose.

Lots of people aren't on today, we've had a number of losses this week. If you're patient, they'll be back on in a bit.
 
I know. I have a number of pALS and cALs on my FB. Last week I saw at least one person a week who had been lost. And I read most recently, your friend Allen. I'm so sorry for your losses in ALL regards. It's so sad. Since all of this started, I've become pretty active in the ALS community in regards to donating and once I get things in order on my side, plan to volunteer here locally with the MDA. My neighbor has MD, he's 9 and while it's not the same, here in my city MD & ALS are within the same bracket in regards to fund raising and volunteer work. We also had a fund raiser here in town for Dutch Bros. where all the proceeds made that day went to the MDA for ALS research. You're all in my and my son's prayers every night, but I know that doesn't help today.

As far as giving me answers, take your time. All feedback is appreciated regardless of time frame as I'm sure you ALL have your own daily issues to deal with. <3

The fact that an EMG can tell early on gives me much more reassurance.
 
Also, the emg was done in my left arm, leg, and the first one, in part of my back.
 
It's very obvious from your latest post that you don't want to tell us what your ALS specialist said.

So I still think that your specialist told you that you don't have ALS, and the reason you are here is to try to find some "symptoms" to justify going back.

I don't think you are being honest with us; you claim to have read the stickies but you don't know even basic facts about the disease. All of the information given to you on this thread is in the stickies. So why are you asking questions when you allegedly already know the answers? Particularly when those answers would come as a profound relief to anyone who genuinely did not want to have this horrible disease?
 
I didn't think it was necessary for me to say what my specialist said. I don't have a diagnosis, obviously. Otherwise, I wouldn't be asking. So I assumed that spoke for itself.

As far as reading the sticky threads, I have read them. All of them. Some more than a few times. You don't have to believe me. But I didn't come here to argue; I came here for answers that I didn't find in the sticky threads. So, I'm not going to do this with you. Think what you want.
 
You are on an ALS forum under the Do I Have ALS? threads, with "Just a few questions" and you neithor initially nor after being questioned specifically think that it is necessary to tell anyone what "one of the best ALS specialists in the country" said to you about you having ALS.
I agree with you 100% "that spoke for itself"!
 
Youre right. Youte absolutely right. Sorry for bugging.
 
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