Please help me figure out if this could be als

[ShiftKicker]

I am sure you understand that a bunch of strangers on the internet will not be able to help you or your doctors with such a monumental and complicated thing as a diagnosis of ALS though. It's clear there is an issue, but it is not something that appears to be familiar to the people here who have answered you.

Sadly, with neurologic issues, sometimes the only thing that can be done is to wait. Hopefully your neurologist will be able to compare the most recent with the results in 2 months and provide you some more information.

 

[affected]

My husband had bulbar onset ALS and I can assure you that you are not describing a single onset symptom. I'm not saying nothing is wrong, just saying that we are agree with your doctors that there is no ALS detectable. I'm sorry but as a terminal illness, you can celebrate that the thing you fear is not what is going on there.

Sometimes diagnosis for some issues is a long path, so I hope you can make the most of the time you now have til the next lot of testing. If this were ALS, and it was early, they would still have classic things to find, just not enough yet to say for certain. Instead they have no classic symptoms at all. I do realise you may 'feel' they are classic symptoms, but it is really common to get stuck in believing that when there is no clinical evidence. All the best, I do hope this is resolved for you sooner than later.

 

[Vivz]

Hi, thanks for this. Can you please explain why you believe it is not bulbar? I have denervation in 2 muscles in my face (you can check my emg report) , my soft palate deviates to one side, my voice is nasal, I cant smile on the right side, I have fasciculations all over the body and my symptoms got slowly worse over the course of a year. It started with the soft palate and nasality and since a few months my smile got crooked too and thats what the emg shows

 

[Vivz]

Do you perhaps have your husbands emg report for comparison?

 

[affected]

Sorry Viv, we do not compare notes with people in this section and asking for that is really quite inappropriate.
Denervation in 2 muscles does not mean anything like ALS, not even close.
If we compare symptoms, people start to believe they develop them. So the best thing is: you describe what is happening, and we are able to say that this is or is not what happens with bulbar onset ALS.
While your EMG may not be 'clean', it is used to diagnose a whole range of conditions, and so it is 'clean' so far as ALS. But please go back and discuss this with your doctor. Trying to figure it out by going back and forwards with terminally ill people, or their carers is not the way to get answers now.
Please let us know once you have a diagnosis.

 

[Vivz]

Ok thanks will do

 

[lgelb]

Remember, nerve injuries can be from events long past, and can worsen/improve over time, sometimes waxing and waning (which ALS does not). It sounds like stroke was ruled out, which is good.

Another approach to progressing toward a diagnosis and perhaps improving your condition, would be to start work with a speech/language pathologist. If/as there was any improvement or not, that could help narrow down the possible diagnoses.

 

[Vivz]

Hi, thanks for this. If you look at my emg report you can tell the injury is recent and not an old injury because of the amplitude of the motor units and polyphasic potentials. My speech issues started one year ago with my soft palate being afected. The issue with my smile started in the last 6 months based on the emg I had. Therefore this explanation does not make sense. It must be something progressive. All my brain scans have been negative

 

[affected]

Viv, go back to your doctor. You have worn out all that can be offered here. Mods, please close this for Viv's own sake.

 

[Bestfriends14]

Viv, it's really time to move on. You've been told all you can at this stage. It's clear you think you know more than the doctors and the folks on this forum who live ALS daily. You won't believe any of them, so why don't you diagnose yourself with ALS then? You have nothing to lead anyone to think you do, but you won't believe the answers given to you by numerous people. On a side note, asking to see someone's deceased husband's (or anyone for that matter) EMG report for comparison is beyond crass and inappropriate.

I do wish you good luck but at this stage, you really need to take any further questions you have to your doctor.