Advice required please

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Nikki J

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Since you had symptoms in your limbs and an ok emg the question is really moot. We see countless people come here with limb worries get cleared and then develop bulbar “ symptoms”. However you should always tell your doctor all your concerns. it is for them to judge what is important and or relevant
 

seb88

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I apologise for the photos but I feel like I’m driving myself insane with worrying about bulbar ALS. I’m not really sure where it’s come from as I was quite rational when I initially went to the neurologist about my limb symptoms but I seem to have gone down a total rabbit hole. I’ve a 19 month son so I really don’t want to be feeling like this.
I’m just really annoyed at myself that I didn’t ask to doctor to test one of my bulbar muscles as now I’m convinced that my tongue has atrophy.

I’m sorry I know tongues are gross but please would someone mind telling me if this is what tongue atrophy looks like. I can only notice it when my tongue is in my mouth, not when I stick it out, like 2 grooves on the middle sides of it. I cough when I drink cold liquids but I think I’ve always done this, and sometimes I feel I have food stuck in my throat. Nobody has noticed me slurring my speech although I think I am ever so slightly. I can move my tongue normally I’m just concerned about its appearance. Should I push for a further EMG?

Many thanks in advance
 

Bestfriends14

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Oh my...please go speak to someone who can help you with your worries. You really do not want to fall into the dark, lonely hole of illness anxiety. Yes, you are most certainly correct, tongue pictures are gross and unnecessary. No one is going to look at these pictures and suddenly say "Oh, he is right! He does have ALS!". You have your health, yet you are here, asking terminally ill folks and their exhausted caregivers (I was up for three hours with my PALS overnight), to hand hold your anxiety and obsession with ALS. Do you see how that sounds? Pretty self-absorbed, doesn't it? My apologies for being blunt, but your posts asking the same questions again and again are enough at this point.

I sincerely wish you the best getting the help you need. That help will not be in the form of another EMG or neuro visit, but will most likely be in the form of a professional to help move you past this phase you are going through.

Take good care.
 
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Nikki J

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I removed the pictures. Gross as you said. I certainly see no atrophy but it is for your doctors to determine. Not you and not us.

tell your doctor everything let them direct your care. Pushing for specific tests does not help you. Go, say I have x yz and what is wrong with me.

please do not post until you have a definitive answer from your doctor
 

Clearwater AL

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Seb, "... but I feel like I’m driving myself insane with worrying about bulbar ALS." How true.

"I’m convinced that my tongue has atrophy". That's your opinion... probably driven with
your severe Health Anxiety. Only a specialist can determine that.

My opinion... you need help with your Health Anxiety right now more so than the issues
with your tongue because as you wrote... " Nobody has noticed me slurring my speech"...
but you.

Most important... believe what the doctor tells you.

Until then as Nikki posted...
"please do not post until you have a definitive answer from your doctor."
 
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seb88

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I had my follow-up with my neurologist yesterday. I just listened really to what he said which was that the doctor checked 16 muscles on my EMG, all of which were completely normal and all of my blood results were good. He did say often they checked the tongue but obviously hadn’t felt the need here. I mentioned my tongue had been twitching but didn’t mention atrophy or ask him to look at it as 16 muscles seems pretty thorough to me and I’ve got my anxiety under control this week. Hopefully I’ve not made a mistake by not making a big thing of it but that’s what happened anyway. I’m assuming you all think 16 muscles is a very thorough EMG and I should forget about a tongue EMG. I’m sorry if I caused offence with my previous post, none was meant at all. You’ll see I’ve donated to the forum as I do appreciate all of your advice and I just really want to close this chapter in my life with the full information.
 

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Consider it closed. With 16 muscles on display, if you had ALS, whether involving the tongue or not, there would be evidence on EMG of something wrong with the motor neurons, full stop.

All the best.
 

seb88

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Thanks so much Laurie, I thought that would be the case!
 

seb88

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I noticed a weird feeling when running, almost like my throat was narrowing so I came home and had a look and my soft palate doesn’t stay lifted when I say ah. It does lift initially but if I say a long ‘ahhhh’ the uvula drops half way through the ah. Is this a sign of bulbar ALS? Should I be worried or is it enough that it lifts in the first place?

thanks!
 

ShiftKicker

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Hi seb- please keep posting in your existing thread. It helps for people to see your posts all in one place.

Self assessment and testing like you're doing is a real sign you are unable to believe your doctors when they've cleared you of ALS. I am hoping you are able to find appropriate support for your health anxiety while you work with your doctor to get to the bottom of your symptoms. Because you've been cleared of ALS, this forum is not an appropriate place to keep posting, as the folk here are not able nor qualified to provide the kind of support you are looking for.

Please visit with your doctor if you are still struggling. Take care
 

seb88

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Thanks ShiftKicker, and apologies for starting a new thread, I couldn’t work out how to find this one!
You’re right that my anxiety is high and I think regardless I need to seek help for this which I am going to pursue.

I have been discharged from my neurologist on the basis of a clean limb EMG but I am concerned that bulbar onset has potentially been missed given this current situation and the fact that none of my bulbar muscles were tested. That’s why I just wanted some guidance as to whether in your experience you thought this was indicative of bulbar onset. It is hard for me to see my neurologist again post discharge so I don’t want to unless I have possible cause for concern.

many thanks again and I really don’t mean to cause any offence.
 

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You need to stop right now, for your own sake, as well as respect for the members here. I know that sounds harsh, but you have been told so clearly that you do not have ALS, yet you are expecting the terminally ill to pander to your anxiety. Please consider what that really means.
A doctor is the only appropriate person for you to take this to now.
 

seb88

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I am sorry to be back here but my symptoms keep getting worse and I would really appreciate some advice. I’m struggling to swallow small pieces of food, they keep getting stuck in my throat. I can feel them and then if I stick my fingers in my throat they come back up. Things like small pieces of bread, fruit and rice. No problems with liquids. Is this a problem with my oropharyngeal swallowing? I can’t shake the thought that this is bulbar ALS. So swallowing issues usually present in this way?
 

ShiftKicker

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Seb, can you read all through the previous posts on this thread again? You can see the folk here have really tried to reassure you, but it hasn't worked. You should also reread the Read Before Posting thread again- particularly the section marked "Finally".

It's not clear what exactly you are looking for from the folks on this forum. If it's medical advice, we will always tell people to speak with their doctors, as this forum is no replacement for proper medical care. If it's anxiety support, there are multiple places online that are really helpful and way more appropriate. No More Panic is an excellent one. We can only provide the most basic of info for folks who are not diagnosed with ALS or caring for a person with ALS (which is the primary focus of this forum).

Please visit with your doctor if you have not been reassured by the efforts of people on this forum and by your neurologist. Take care.
 

seb88

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Thanks ShiftKicker. I am getting help for my anxiety, I saw a therapist yesterday so I am hoping it will help. What I was hoping to get from my post was just whether in your experience my swallowing problem is how ALS swallowing problems present. Many thanks
 
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