THouse85
New member
- Joined
- Jul 3, 2020
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- P
Hi, I am a 34 year old male who has been exhibiting some worrisome symptoms over the past month
About two months ago, I had this transient feeling of dysphagia with solid foods that would come and go, but didn’t think much about it, and didn’t seem to progressively get worse.
About one month ago when signing the date (June 1st), I felt some difficulty articulating my fingers on my right hand. It was transient, I had just started playing the piano, and attributed it to that and didn’t think about it much.
About three weeks ago, I started noticing transient episodes of shortness of breath, that I first attributed to allergies, but seemed to come and go and didn’t seem to get worse dependent on the situation/exertion.
Fast forward to about two and a half weeks ago, I was having more trouble with my right hand and arm. I could describe it as stiffness, and just difficulty maneuvering my hand around the way I wanted to appropriately. The next day I noticed some stiffness (spasticity?) in my right foot and leg as well. It was intermittent, but this prompted me to make an appointment with the neurologist. Upon waiting for that appointment, I notice I had fasciculations all over my body and now cramping on the lateral aspect of my left foot.
The neurologist did an exam and was unimpressed. I had brisk reflexes all around, but no clinical evidence of weakness/atrophy. He scheduled me for a lumbar MRI, and EMG (at the end of July), and a CPK.
Two days later, the spasticity in my hand arm became more frequent and I started noticing what I assume to be bulbar symptoms. Spasticity of my vocal cords to water/spit in my mouth, difficulty articulating words, and eventually, difficulty swallowing solids. I noticed fasciculations on the right side of my tongue. I couldn’t eat for a few days (that was likely related to stress as well) but would have episodes of relief from these symptoms that would allow me to swallow. I hear some raspiness to my voice. The next few days were torture. Unable to sleep, shortness of breath in bed, GERD (never had before), severe hypnic jerks, biting my cheek etc. Also started having cramping of my facial muscles and right sided paraspinals and abdominal muscles. Lying in bed on my phone I was feeling many of these cramping muscles just give out on me.
I have a few connections so I was able to contact a neuromuscular specialist that fit me in for an appointment and EMG because of “concerns I had ALS”. This Tuesday (about 2.5 weeks since the onset of my more frequent symptoms), he did an exam, found brisk reflexes but no weakness, did an EMG/NCS on my “affected side” (right arm, right leg, right trap, right paraspinous)… all came out clean. Diagnosed with likely CFS/BFS, and even said “you do not have ALS” multiple times. Plan was for follow up was some basic lab work.
I was extremely relieved, ran up and down a hill without SOB, ate a large lunch afterwards, and multiple family and friends were able to breathe a sigh of relief. All was well until yesterday when I was eating dinner I started have difficulty chewing/swallowing again. Transient cramping/articulation problems with my right arm and leg. Transient episodes of SOB. My family (and it even seems like the physicians) are attributing this to anxiety (I’ve had anxiety problems in the past), but I feel otherwise. My hypothesis is that I am still exhibiting mostly upper motor neuron symptoms, that aren’t translating into lower motor neuron signs/symptoms yet (EMG clean, no weakness). The only thing that is odd is the rapid progression of the symptoms, and the transient nature (but maybe it’s all UMN transient spasticity effects)? What do you guys think? Thanks in advance.
About two months ago, I had this transient feeling of dysphagia with solid foods that would come and go, but didn’t think much about it, and didn’t seem to progressively get worse.
About one month ago when signing the date (June 1st), I felt some difficulty articulating my fingers on my right hand. It was transient, I had just started playing the piano, and attributed it to that and didn’t think about it much.
About three weeks ago, I started noticing transient episodes of shortness of breath, that I first attributed to allergies, but seemed to come and go and didn’t seem to get worse dependent on the situation/exertion.
Fast forward to about two and a half weeks ago, I was having more trouble with my right hand and arm. I could describe it as stiffness, and just difficulty maneuvering my hand around the way I wanted to appropriately. The next day I noticed some stiffness (spasticity?) in my right foot and leg as well. It was intermittent, but this prompted me to make an appointment with the neurologist. Upon waiting for that appointment, I notice I had fasciculations all over my body and now cramping on the lateral aspect of my left foot.
The neurologist did an exam and was unimpressed. I had brisk reflexes all around, but no clinical evidence of weakness/atrophy. He scheduled me for a lumbar MRI, and EMG (at the end of July), and a CPK.
Two days later, the spasticity in my hand arm became more frequent and I started noticing what I assume to be bulbar symptoms. Spasticity of my vocal cords to water/spit in my mouth, difficulty articulating words, and eventually, difficulty swallowing solids. I noticed fasciculations on the right side of my tongue. I couldn’t eat for a few days (that was likely related to stress as well) but would have episodes of relief from these symptoms that would allow me to swallow. I hear some raspiness to my voice. The next few days were torture. Unable to sleep, shortness of breath in bed, GERD (never had before), severe hypnic jerks, biting my cheek etc. Also started having cramping of my facial muscles and right sided paraspinals and abdominal muscles. Lying in bed on my phone I was feeling many of these cramping muscles just give out on me.
I have a few connections so I was able to contact a neuromuscular specialist that fit me in for an appointment and EMG because of “concerns I had ALS”. This Tuesday (about 2.5 weeks since the onset of my more frequent symptoms), he did an exam, found brisk reflexes but no weakness, did an EMG/NCS on my “affected side” (right arm, right leg, right trap, right paraspinous)… all came out clean. Diagnosed with likely CFS/BFS, and even said “you do not have ALS” multiple times. Plan was for follow up was some basic lab work.
I was extremely relieved, ran up and down a hill without SOB, ate a large lunch afterwards, and multiple family and friends were able to breathe a sigh of relief. All was well until yesterday when I was eating dinner I started have difficulty chewing/swallowing again. Transient cramping/articulation problems with my right arm and leg. Transient episodes of SOB. My family (and it even seems like the physicians) are attributing this to anxiety (I’ve had anxiety problems in the past), but I feel otherwise. My hypothesis is that I am still exhibiting mostly upper motor neuron symptoms, that aren’t translating into lower motor neuron signs/symptoms yet (EMG clean, no weakness). The only thing that is odd is the rapid progression of the symptoms, and the transient nature (but maybe it’s all UMN transient spasticity effects)? What do you guys think? Thanks in advance.