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Amyotrophic Lateral Sclerosis (ALS) Message Board

Amyotrophic Lateral Sclerosis (ALS) Board Index

With ALS, the hallmark symptom is clinical muscle weakness. For bulbar ALS, this typically manifests as weakness of the tongue and occasionally the upper throat muscles. Weakness of the tongue results in slurred speech and usually fasciculations in the tongue. Patients cannot feel these in the tongue and at rest they are often described as looking like a "bag of worms". Movement when the tongue is extended is totally normal. Weakness of the tongue can also result in difficulty swallowing solids due to the inability to push the food back correctly. This is only rarely a presenting symptom in ALS. With upper throat weakness and spasticity (upper motor neuron involvement) there can be problems swallowing liquids. This can be a presenting symptom of ALS but is less common than slurred speech due to the tongue normally being affected first.

Problems with hoarseness do usually happen in the course of ALS but generally not for quite some time. This is because the hoarseness is generally caused by phrenic nerve involvement which occurs relatively later in the disease process. The hoarseness and speech difficulties you describe don't really evoke ALS. If you were slurring for a year and you had ALS you would know it.

Muscle function being good is a good sign. Nearly everyone with bulbar symptoms develops limb symptoms at some point of the disease, generally fairly early on.

You can't really do a proper Babinsky test on yourself or test your own reflexes etc. You have to just trust the health care professionals or fine new ones if you don't.

Having swallowing issues is frightening. It certainly doesn't mean you have ALS though. ALS is a rare disease, even for 60 yo. Bulbar onset is even more rare. Having it start with swallowing is even more rare. Lots of things cause swallowing issues including several GI diseases such as GERD. One question is what kind of swallowing study are you having? Is it a barium swallow or modified barium swallow. In MBS a speech therapist and radiologist look at the top part of your swallowing to evaluate how the food gets into the throat and if the upper throat structures are working the way they should. It also shows a good picture of your cervical spine which believe it or not can cause swallowing issues as well. In a regular BS, the esophagus and lower structures are evaluated as is reflux etc. Both can be useful in evaluating swallowing issues but I wonder if a MBS would be beneficial in your case. You mentioned initiating swallowing and MBS might be able to evaluate that better. Something to discuss with your Dr at any rate.

Good Luck and let us know how your swallow study goes.
I forgot to mention one other thing : the average time from symptom onset to death or permanent ventilation in bulbar ALS is 6 months to 2.5 years. I mention this because being in good health after a year points very strongly away from bulbar ALS.
I'm sorry that your MBS indicated issues. There are many disease processes that can include pharyngeal swallowing issues. Some of them structural and some neurological. Mechanical issues include pharyngeal pouches (was that mentioned at all given you said pouches above?) and mechanical obstruction (****, rings etc.). Neurological conditions include Parkinson's disease, Bell's palsy and myasthenia gravis.

In the context of ALS, isolated pharyngeal swallowing issues wouldn't be the normal presentation of bulbar ALS as it usually starts with tongue weakness.

Unfortunately, you'll probably have to go through the diagnostic process to find out what's going on. Hopefully, you'll get a competent neurologist that can come to an accurate diagnosis quickly. Good luck, and please let us know how you get on...
I'm sorry you are still having trouble and are unable to get answers. Have you seen a neuromuscular specialist neurologist yet? Have you had an EMG? I would think that would be a good next step as it appears you've exhausted the expertise of your current neuro. I'm not sure where you live but teaching hospitals will normally have neuromuscular specialists as will the alsa and mda certified clinics. These specialists should be able to figure out if there is a neuromuscular problem and what type it is if so.

When you had the MBS did they mention aspiration? If so please be very careful as aspiration pneumonia is possible.

This certainly doesn't sound like a classic presentation of bulbar als especially given the timeframe but it does sound like something is going on.

Hang in there and don't stop looking for answers.

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