Wholeheartedly Believe It's Bulbar Onset

[lgelb]

Central sleep apnea (your brain not triggering breaths on the right schedule) is not seen as part of ALS onset as you describe. It is something that some people just have.

But, importantly, if you have been short of oxygen on and off throughout the night, coordination and speech are often affected. So once you get the PAP machine settings just as you need them, you should feel considerably better.

 

[Dazzaschofield]

Hi All,

Thanks for the responses, I understand that it doesn't sound like ALS and am willing to take the feedback from the group. Once I have had the NCS and EMG then seen the neurologist again hopefully it will put my mind at rest. If he does give me the all clear then I will certainly be speaking with my PCP about CBT therapy etc as I do fully understand I do have anxiety (whether or not this is another server episode we will know soon).

As I'm sure your all aware someone with Anxiety can make tedious links that mean nothing and put them to the forefront of your mind as being a sign of "this is the end", I dont want to go to the neurologist with a load of half baked questions and so I would like to ask for advice, I understand this isn't a therapy group and that a lot of the forum member can become frustrated with people who just wont accept they have a full life ahead of them so If I come across like this I apologise and feel free to ignore any of these questions and pass on by this thread, however any answers would be helpful.

As noted I am scheduled for the NCS and EMG in a few days, I am unsure of exactly where they are going to test so I'd like to know, if ALS presented in the bulbar region and say the left leg was tested with an EMG/NCS, would this still show on the tests or could it be missed, should I be speaking with my neuro prior to the test and ensuring that the Bulbar region is tested or does this not matter?

In bulbar, is it typical to have symptoms that present Bi-laterally? for instance I feel that I am drooling from both corners of my mouth, no physical drool comes out however both corners of my mouth do seem to be 'moister' and I find myself wiping away the excess moisture multiple times per day. Also in terms of drooling is this generally an early symptom or late symptom? Does it come from excess saliva or weak mouth muscles? What would be the symptoms of weak mouth muscles, I find that when I smile with my mouth closed that I have two distinct gaps between my bottom and top lip at the corners of my mouth (almost like popeye) which seems like I have weak muscles on either corner of my mouth. Do you actually have muscles in your lip? Is there even such a thing as facial muscle involvement in bulbar onset or is it generally the tounge, swallowing etc that are effected?

Is there any specific questions that I should be asking my neuro other than the obvious I.E Is it ALS? If not what? etc

Again apologies if these seems like the rambling of an anxiety ridden moron (I certainly hope they are), please, if I am frustrating anyone you do not need to answer but any answers that could help me narrow down my ramblings to the neuro would be greatly appreciated.

Regards

Darren

 

[Nikki J]

although emg abnormalities are often found in asymptomatic areas it does make sense to emg the area of symptoms. Your neurologist should have put a reason for the test such as left hand weakness r/o MND or whatever. There are several muscles that are an adequate screen for bulbar. You only need one tested to rule it out

Drooling is usually late and is a function of inability to handle normal saliva due to weakness and especially swallowing issues

The question to ask is what is wrong with me. If they say we don’t know the follow up is what is in your differential diagnosis and what do I need to do to narrow it down.

 

[Dazzaschofield]

OK so just had the NCS and EMG. The doctor tested my left leg and left arm. All in all I think 2x needles in the leg and 2x in the arm. Although I asked about the tounge/mouth he stated that as I was having symptoms elsewhere that it wasn't needed.

Have to say this is the terrifying part now, the results could be up to 2x weeks and are all I'll likely think about.

I'll post again once I have them.

God bless all.

 

[Nikki J]

If he had found anything worrisome he would have tested more muscles.

 

[Dazzaschofield]

Hi All,

As promised an update.

After what feels like years of waiting I finally got my results through today.

The Neuro didn't call me in to discuss results nor did I receive a copy of the report I just received a copy of the letter that was sent to my referring GP.

The letter stated

"I am please to let you know that Darrens nerve conduction study of the upper and lower limbs is normal and indicates there is no evidence of perhipial nerve issues.

Needle EMG showed minor changes which could raise the possibility of mild left C5/C6 nerve root irritation/impingement.

As you know his brain MRI was normal and cervical spine MRI showed wear and tear with possible impingement of the left existing C6 nerve root.

As such we have found no evidence of any organic disease that would explain Darrens symptoms"

So there it is.... No ALS 😁

Don't get me wrong, I have a big ass demon inside me saying....'but they didn't check your mouth/tounge' or 'but what is the minor changes and have they got them wrong' however I'm fighting that demon and trying to get him to bugger off.

I know I still feel Terriible, my muscles still get extremely weak after very little exercise, my tounge still feels like it's swollen and not responding and a lot lot more. However I,'ll work with what I know. Try to treat the sleep apnea as best I can, lose weight and get healthier and hopefully never have this ALS belief again.

Thank you to all Pals and Cals for listening to my worries and (in the most non insulting way I can say this) I hope I never have to speak with any of you ever again.

God bless all 👍

 

[affected]

great news, congratulations!
Please take this the right way - don't come back with 'just one more question'. You have been cleared, and if you become concerned with that demon hankering, go back to your doctor as we won't have any way to answer anything more. Enjoy finding your way back to living!

 

[lgelb]

Thanks for the update. I am confident that if your PAP is adjusted correctly and you use it all night, and of course lose weight, you will find yourself in a better place.

Skimming your past posts, I also want to note for the record that abnormal sleep study results are not in any way specific to ALS, and that undiagnosed/under-treated apnea, which is associated with cardiovascular disease, diabetes, and other serious conditions, is very common.

If you (speaking to a general audience here) have been recommended for a sleep study you haven't done, or have been prescribed a PAP you're not using, you are shortchanging and quite possibly shortening the rest of your life.