I am posting today to ask for your help. I need to know if anyone has experienced unexplained emotional outbursts, such as crying, laughing, or anger for no reason; or if anyone with SBMA has been diagnosed with Pseudobulbar Affect (PBA) or Involuntary Emotional Expression Disorder (IEED).
PBA and IEED are two different names for the same disorder. It involves episodes of crying when not feeling sad, laughing when nothing funny happened, or becoming angry for no reason.
PBA or IEED are both common among people with ALS/Lou Gehring's disease (up to 50% of patients), but I haven't been able to find any research on whether they affect people with SBMA/Kennedy's disease too.
I have been experiencing certain emotional outbursts and I really need to know if this affects other people with SBMA/Kennedy's disease, or if I need to investigate another reason.
If you would like to reply confidentially, please use the Private Message feature of this forum. I promise I will keep all replies confidential.
Thanks in advance for any help.
Yah, count me in for the emotional outbursts. I had put it down to coping with Kennedy's (or not).
Dan, you bring up a good topic for which I can tell you that I've experienced these unexplained emotional outbursts. I've not been diagnosed with Pseudobulbar Affect (PBA) or Involuntary Emotional Expression Disorder (IEED).
These moments are completely unexpected and others have told me how my actions are out of character. I've been trying to do some on-line research concerning whether those with SBMA have these experience with the onset of bulbar symptoms.
It would seem to stand to reason that if ASL/SBMA share the bulbar aspect of a NMD that we would have similar experiences related to unexplained emotional outbursts. But I really don't known.
Good questions though.
People that should know say:
PBA is seen in patients that have an "upper motor neuron" component of their disease. Kennedy's disease does not have an upper motor neuron component therefore emotional lability would have some other basis.
Good Morning, I am not aware that unexplained emotional outbursts are a symptom of KD.
I have seen times, however, where my frustrations get the best of me. For example, if I can not longer do something that I have done or enjoy doing and now need to ask for help. I view these times as part of my acceptance process (or non-acceptance).
Cam is correct that KD is a lower motor neuron disease and that is what differentiates KD from ALS.
Progressive bulbar palsy, also called progressive bulbar atrophy, involves the bulb-shaped brain stem —the region that controls lower motor neurons needed for swallowing, speaking, chewing, and other functions. Symptoms include pharyngeal muscle weakness (involved with swallowing), weak jaw and facial muscles, progressive loss of speech, and tongue muscle atrophy. Limb weakness with both lower and upper motor neuron signs is almost always evident but less prominent. Affected persons have outbursts of laughing or crying (called emotional lability). Individuals eventually become unable to eat or speak and are at increased risk of choking and aspiration pneumonia, which is caused by the passage of liquids and food through the vocal folds and into the lower airways and lungs. Stroke and myasthenia gravis each have certain symptoms that are similar to those of progressive bulbar palsy and must be ruled out prior to diagnosing this disorder. In about 25 percent of ALS cases early symptoms begin with bulbar involvement. Some 75 percent of individuals with classic ALS eventually show some bulbar involvement. Many clinicians believe that progressive bulbar palsy by itself, without evidence of abnormalities in the arms or legs, is extremely rare. http://www.ninds.nih.gov/disor..._neuron_diseases.htm
God is the greatest physician of all.
Location: Chicago, IL
I'm not sure what I experienced was truly PBA but it seems related. My most typical inappropriate emotional response is nervous laughter though I also have experienced tears of joy. I used to commonly experience excessive emotional intensity of all types from joy to sorrow and anxiety. All of which has diminished significantly over the past couple of years.
I suspect this is only indirectly related to KD by way of having previously had very erratic blood sugar after meals when I was eating a commonly recommended high carbohydrate low fat diet. Skeletal muscle is an important component of the body's blood sugar regulation being the largest insulin responsive sink for blood sugar. Loss of muscle mass and loss of muscle quality such as excess intramuscular lipid accumulation are major contributors to insulin resistance, hyperinsulinemia and all the resultant problems of metabolic syndrome as it progresses towards type 2 diabetes. Unstable blood sugar, both the highs and the lows, damages nerves of all types as well as many other tissues.
I was increasingly developing a wide variety of symptoms of nerve and vascular damage all of which stopped and have been reversing since achieving stable normal blood sugar primarily by tracking my blood sugar response to foods with finger prick blood test kits and avoiding or limiting quantities of foods that caused a poor blood sugar response.
Erratic blood sugar doesn't just directly damage tissues but it also contributes to a problematic hormonal profile such as suppression of growth hormone / IGF-1 and spikes of cortisol. Since fixing my blood sugar I've been able to achieve an excellent hormonal profile which I suspect is largely responsible for regaining the ability to build muscle mass, strength and endurance through exercise without provoking undue fatigue, soreness, cramps and extreme elevations of cpk and other markers of muscle damage.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614