I'm a new member. I am a male, 61 years old. It has been 21 months since onset of bulbar symptoms (slurred speech, difficulty swallowing, stopped snoring) Was diagnosed with bulbar onset ALS last October.
Was in denial for 9 months as bulbar symptoms progressed but no limb or respiratory symptoms. Decided to go for a second opinion last month as symptoms gradually progressed. The diagnosis of bulbar onset ALS was confirmed with the second opinion as upper and lower motor neuron symptoms were evident in the bulbar region upon examination.
I have just this month been getting plugged in to a local ALS clinic, had 3 appointments with a speech therapist, an appointment with an ALS support nurse and have an appointment Thursday with an ALS social worker.
My bulbar symptoms have progressed to the point that I am going to be scheduled for a peg tube within a few weeks because it has become such a chore to get necessary hydration and nutrition. I have lost 30 pounds since first diagnosis. I also just purchased an ipad and have installed a text to speech app because my speech has deteriorated to the point that I'm difficult to understand.
This week I have started experiencing spacticity in my right jaw muscle when I sleep at night which causes pain and I am treating it with Advil.
At my second opinion appointment my limbs all tested 5 out of 5, all the way from fingers to toes, no limb symptoms (after 21 months). I have also had two breathing tests (one in July and one last week) both came back normal. So that is a brief history.
I have a question that no one I have seen for treatment has been able to answer with any clarity. From the onset of my symptoms I have been experiencing severe mental fatigue, not just fatigue from eating or talking but extreme malaise. This fatigue has worsened as the disease has progressed to the point that I am very limited to what I can do. It is especially bad in the morning when I wake up, it takes until about noon before I can even function.
For my nutrition and fluids, even though getting them all in is a chore, I am getting between 1500 and 2000 calories a day. As I said, I have no limb or respiratory symptoms so I don't have limb weakness and I'm not short of breath after an activity. I just feel terribly bad most of the time.
I have searched high and low online to see if any other PALS have this kind of mental fatigue and haven't really found much evidence of that except in late stages with respiratory issues. Also I am on depression and anti-anxiety medication and have an appointment with a psychiatrist in 2 weeks. Any input from PALS or CALS would be greatly appreciated.
Was in denial for 9 months as bulbar symptoms progressed but no limb or respiratory symptoms. Decided to go for a second opinion last month as symptoms gradually progressed. The diagnosis of bulbar onset ALS was confirmed with the second opinion as upper and lower motor neuron symptoms were evident in the bulbar region upon examination.
I have just this month been getting plugged in to a local ALS clinic, had 3 appointments with a speech therapist, an appointment with an ALS support nurse and have an appointment Thursday with an ALS social worker.
My bulbar symptoms have progressed to the point that I am going to be scheduled for a peg tube within a few weeks because it has become such a chore to get necessary hydration and nutrition. I have lost 30 pounds since first diagnosis. I also just purchased an ipad and have installed a text to speech app because my speech has deteriorated to the point that I'm difficult to understand.
This week I have started experiencing spacticity in my right jaw muscle when I sleep at night which causes pain and I am treating it with Advil.
At my second opinion appointment my limbs all tested 5 out of 5, all the way from fingers to toes, no limb symptoms (after 21 months). I have also had two breathing tests (one in July and one last week) both came back normal. So that is a brief history.
I have a question that no one I have seen for treatment has been able to answer with any clarity. From the onset of my symptoms I have been experiencing severe mental fatigue, not just fatigue from eating or talking but extreme malaise. This fatigue has worsened as the disease has progressed to the point that I am very limited to what I can do. It is especially bad in the morning when I wake up, it takes until about noon before I can even function.
For my nutrition and fluids, even though getting them all in is a chore, I am getting between 1500 and 2000 calories a day. As I said, I have no limb or respiratory symptoms so I don't have limb weakness and I'm not short of breath after an activity. I just feel terribly bad most of the time.
I have searched high and low online to see if any other PALS have this kind of mental fatigue and haven't really found much evidence of that except in late stages with respiratory issues. Also I am on depression and anti-anxiety medication and have an appointment with a psychiatrist in 2 weeks. Any input from PALS or CALS would be greatly appreciated.
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