Still concerned

[DPJ1375]

Hi

I am now experiencing a variation in existing symptoms and new symptoms.

The initial twitching from May 2015 has pretty much disappeared, unless I have really exerted myself during the day. Any muscle I use fatigues much more quickly.

I am a seasoned singer and my speaking voice (despite proper rest, reflux medication and dietary improvements) is constantly hoarse. I have increased mucus and saliva production (especially after eating) and find myself constantly clearing my throat and increasingly aspirating small amounts of thin liquids. Cheeks feel heavy and voice tires more easily. No slurring of words or issues with solids.

I am concerned that this could be bulbar onset, similar to what Vince/Blueandgold experienced on his diagnostic journey (btw I am not expecting Vince to respond as I know he has been quite unwell, and I appreciate most of you are dealing with or caring for those with MND).

All I want to know is can bulbar start this way? Most say slurring/nasal tone and swallowing difficulties are usually first and (sometimes) hoarseness later, although I did see a post on here where someone's father was hoarse for a year before any other issues. I know statistically for my age and sex I have a 1 in 3 million chance of bulbar onset.

I expect I should have an ENT investigate and, if there reason to suspect a neurological issue, perhaps back for a neuro visit (not sure if an EMG of bulbar area will show any issues as I believe this is a notoriously difficult area in which to detect abnormalities - there are a number of posts where bulbar onset PALS had clean EMGs but manifest clinical evidence of bulbar issues).

Thanks for reading

 

[lgelb]

Sounds like more like MG or something else than MND. Bulbar onset doesn't manifest one benign way for a year and move into another fairly benign phase for another.

By all means, see an ENT.

 

[affected]

Hi,
You say you are aspirating - have you had hospitalisations for pneumonias? Have you been diagnosed as aspirating or are you presuming you are aspirating? I'm asking as this is a very important distinction to make.

 

[DPJ1375]

Hi Tillie

No, it is an assumption on my part (presumably wrong terminology). It feels like small amounts of thin liquids go down my windpipe instead of my oesophagus. I have not been hospitalised.

I am just concerned that some of my new symptoms I am experiencing are following such a similar course to Vince/Blueandgold and he was hoping at that time that it was just BFS or some other benign cause. There are also some differences - I've been pretty much ok for 18 months (he experienced rapid deterioration in around 8 months after which he was diagnosed with ALS), he had non-stop body-wide twitching (mine is now very seldom, mainly in same muscles after exertion) and I have no visible atrophy (he had thenar wasting from the beginning) and he had severe cramps a lot of the time (I have some from time to time but not interfering with daily living).

I am hoping my stuff is all benign, although it is beginning to feel less so. I know worrying has never helped anything improve, but I can't sit around waiting for something to drop on my head when I can see its shadow on the ground. I need to take some action to get to the bottom of this. If there is a reliable way of assessing bulbar neuron damage before I start sounding like the town drunk or choking while having a drink, I'd gladly do it. Do issues have to be so obvious that even a trained monkey could tell me there is something amiss?

Thanks again to everyone for your valuable time and insights.

 

[affected]

Thanks for clarifying.

You don't have any actual ALS symptoms. Aspiration is when something is inhaled into the lungs. If you were aspirating, you would know and you would be getting lung infections or pneumonias.

You still are not failing in any way - you are taking some incidental and lesser symptoms, ignoring the greater and important symptoms, and getting all worked up that you have a terminal illness.

If you had bulbar symptoms now you would be failing - you would be failing to speak and failing to swallow. What you are reporting, once again are things you are feeling.

Please see an ENT and check out what is truly happening so you can address any actual medical condition involving your mouth, or any other medical condition that can be found. But let the doctors work out what they need to follow up. I hope you get this solved soon.

 

[affected]

Do issues have to be so obvious that even a trained monkey could tell me there is something amiss?

Yep they do - and if it is ALS those symptoms would be there.

 

[Firefighter58]

I have ALS and I did not see a trained monkey, but may be you should. If you end up having ALS which I doubt you have, you will be seeing that monkey and you better hope it is well trained.
I also sound like the town drunk, as many of us do.
You have disrespected all of us and I feel this no place for you, you hollow headed fool

 

[Teppo]

Aspiration, as a matter of fact can occur chronically without producing lung infections. It is largely a function of what is being aspirated. Spit is pretty benign stuff. We all aspirate it every night while sleeping. Maybe we cough and roll over; maybe we do not.

Inability to cough adequately and aspirating food or regurgitated stomach contents increases the likelihood of infection (pneumonia).

Anyone who thinks they are aspirating ("I inhale and something ends up in my windpipe. I cough like crazy for a minute and it's over with.") probably is. Any process that causes vocal cord dysfunction can lead to aspiration as described. There are many, many, possible causes---brain, nerves, muscle.

 

[DPJ1375]

Dear Firefighter

I apologise humbly, unreservedly and without qualification - I did not mean to make light of yours or anyone's condition or suffering. I may have a hollow head (my MRI suggests otherwise) but I am not hollow hearted.

I meant only to ask, do bulbar onset symptoms have to be obvious to virtually anyone before an ALS specialist can work out there is something wrong involving that area of the body.

I am a singer, I know my voice well and am seriously concerned that it seems to be weakening daily. I would just like a specialist to be able to tell me one way or another if it involves ALS, perhaps using EMG, and was seeking advice as to whether it could be picked up. It seems unfortunately not to be possible.

I only mentioned "the town drunk" as so many people with dysarthria from ALS describe themselves as sounding like they're always intoxicated. So, again, I'm sorry for what was a poor choice of words.

 

[WendyWooG]

DP
An EMG would be able to show ALS involvement. I had not heard that it was notoriously difficult, I don't have bulbar symptoms but my EMG showed findings so they tend to show up any problems. If you are concerned with what's happening and singing is a big part of your life it's worth working with your doctors be it ENT or other specialist as needed. It's best to not ask is it this or that, but what do you think it could be?

Hopefully you have found it reassuring that the people who have bulbar experience do not feel this is how it generally starts.

I wish you luck with your doctors and hope they find a solution for you soon.

Wendy x