PhoenixShaham
New member
- Joined
- Dec 17, 2021
- Messages
- 6
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Houston
Hello everybody my name is Phoenix and I am a teenager with no family history of neurodegenerative disease. I also have no health conditions. Just want to say what’s been happening to me in the past few months. I had to postpone college due to symptoms.
Starting in July I started having viral symptoms. I had headaches, photophobia, phonophobia, and vertigo. These symptoms only lasted for a week.
The next week I had left sided chest pain, burning throughout the body, numbness everywhere, and myoclonic jerks. This also lasted for 6-7 days.
Now starting July 16th of this year I started twitching in the left leg and cramping. I think in a few days it jumped to my face and neck on the left side. I began having swallowing issues immediately. My voice also became hoarse. At the time many of my fasciculations were mainly non visible. But I would get around 100 per minute. I went to three ENTs and they didn’t find anything.
I went to a general neuro and he recommended me to multiple specialists since he really didn’t know what was happening. My mom was super anxious and somehow I was able to meet an ALS specialist very quickly. He ordered an EMG, Barium Swallow, MRI of the Brain and C-Spine with contrast, and loads of blood work for hundreds of neurological disorders. On clinical exam he noted left sided ptosis and fasciculations in the calves. My reflexes and limb strength were normal. MRI of the brain and c-spine with contrast was clean. All my blood work clean. I thought I’d maybe have MG or peripheral nerve hyper excitability but that was ruled out. My EMG was clean however barium swallow noted silent aspiration of thin liquids. He told me to keep an eye on it. I have dysphagia but because of my unusual presentation he did not suspect ALS. I wasn’t slurring at all. My speech was super articulate but it was hoarse.
Few weeks later at a hospital in TX I had a lumbar puncture done. It was normal. At this point the fasciculations are now visible in my arms. I also have fasciculations in the face that never stop. The neurologist at the hospital noted thenar atrophy but because of the EMG he just didn’t care. I started on doxycycline for suspected lymes. I took it for 10 days with no improvement.
My swallowing got worse. I started choking on liquids and solids. However I transitioned into a thick liquid diet and just had smoothies. It’s now December. I have somehow been able to increase my weight. My fasciculations are visible almost everywhere. I get maybe 120 per minute now. They are mainly on the left side and are continuous. By continuous I mean there has not been a second since July 16th where I have not had one. My facial twitching also became visible and is throughout my face like a mask.
I went to a neuromuscular specialist at the Texas Medical Center. They noted residual left sided lower motor neuron palsy. My reflexes were preserved and strength. However they noted mild limb spasticity and gait abnormality. They again didn’t think it was ALS but said I was maybe exposed to a neurotoxin. They ordered an EMG in January. Since I was anxious I asked if I could be tested for the FUS gene mutation. They said it wasn’t necessary but for my sake they’re testing me. Im still waiting for results
I don’t know how relevant this is but I started functional medicine. My mitochondrial dysfunction and oxidative stress were 0. My glutamate level was also low. I showed elevated lead and gadolinium. I also showed some mold toxicity.
I had a Lyme test done recently and I tested positive.I fished a lot this summer in freshwater areas. But I showed no improvement to doxycycline. Im also scared because I show both upper and lower motor neurons. All my symptoms now are motor in nature. I have no sensory feelings. It’d been 5 months and my voice is hoarse but I’m not slurring. I also have breathing difficulty when lying down. Why I’m concerned about ALS is because of how my symptoms present. I have constant fasciculations mainly on the left side and facial weakness on the left side. My fasciculations had two points in origin: my left leg and face. The fasciculations seemed to spread from my left leg and up. From my face the fasciculations went down and are now making my intercostal muscles twitch every second. My stiffness is mainly on one side so I tilt my neck to the right. My left hand is stiff thus making it hard to open bottle caps. But the main thing that worries me is how my fasciculations used to be non visible and now they are visible everywhere. They really disturb me when I try to sleep.
I’m concerned that my Lyme’s caused me to trigger the FUS mutation. Again I’m still waiting for genetic testing. But I assume I have the gene mutation because all my symptoms line up with ALS. I’m worried I have ALS due to fasciculations, dysphagia, left face weakness, hoarseness, mild spasticity, and shortness of breath.
Starting in July I started having viral symptoms. I had headaches, photophobia, phonophobia, and vertigo. These symptoms only lasted for a week.
The next week I had left sided chest pain, burning throughout the body, numbness everywhere, and myoclonic jerks. This also lasted for 6-7 days.
Now starting July 16th of this year I started twitching in the left leg and cramping. I think in a few days it jumped to my face and neck on the left side. I began having swallowing issues immediately. My voice also became hoarse. At the time many of my fasciculations were mainly non visible. But I would get around 100 per minute. I went to three ENTs and they didn’t find anything.
I went to a general neuro and he recommended me to multiple specialists since he really didn’t know what was happening. My mom was super anxious and somehow I was able to meet an ALS specialist very quickly. He ordered an EMG, Barium Swallow, MRI of the Brain and C-Spine with contrast, and loads of blood work for hundreds of neurological disorders. On clinical exam he noted left sided ptosis and fasciculations in the calves. My reflexes and limb strength were normal. MRI of the brain and c-spine with contrast was clean. All my blood work clean. I thought I’d maybe have MG or peripheral nerve hyper excitability but that was ruled out. My EMG was clean however barium swallow noted silent aspiration of thin liquids. He told me to keep an eye on it. I have dysphagia but because of my unusual presentation he did not suspect ALS. I wasn’t slurring at all. My speech was super articulate but it was hoarse.
Few weeks later at a hospital in TX I had a lumbar puncture done. It was normal. At this point the fasciculations are now visible in my arms. I also have fasciculations in the face that never stop. The neurologist at the hospital noted thenar atrophy but because of the EMG he just didn’t care. I started on doxycycline for suspected lymes. I took it for 10 days with no improvement.
My swallowing got worse. I started choking on liquids and solids. However I transitioned into a thick liquid diet and just had smoothies. It’s now December. I have somehow been able to increase my weight. My fasciculations are visible almost everywhere. I get maybe 120 per minute now. They are mainly on the left side and are continuous. By continuous I mean there has not been a second since July 16th where I have not had one. My facial twitching also became visible and is throughout my face like a mask.
I went to a neuromuscular specialist at the Texas Medical Center. They noted residual left sided lower motor neuron palsy. My reflexes were preserved and strength. However they noted mild limb spasticity and gait abnormality. They again didn’t think it was ALS but said I was maybe exposed to a neurotoxin. They ordered an EMG in January. Since I was anxious I asked if I could be tested for the FUS gene mutation. They said it wasn’t necessary but for my sake they’re testing me. Im still waiting for results
I don’t know how relevant this is but I started functional medicine. My mitochondrial dysfunction and oxidative stress were 0. My glutamate level was also low. I showed elevated lead and gadolinium. I also showed some mold toxicity.
I had a Lyme test done recently and I tested positive.I fished a lot this summer in freshwater areas. But I showed no improvement to doxycycline. Im also scared because I show both upper and lower motor neurons. All my symptoms now are motor in nature. I have no sensory feelings. It’d been 5 months and my voice is hoarse but I’m not slurring. I also have breathing difficulty when lying down. Why I’m concerned about ALS is because of how my symptoms present. I have constant fasciculations mainly on the left side and facial weakness on the left side. My fasciculations had two points in origin: my left leg and face. The fasciculations seemed to spread from my left leg and up. From my face the fasciculations went down and are now making my intercostal muscles twitch every second. My stiffness is mainly on one side so I tilt my neck to the right. My left hand is stiff thus making it hard to open bottle caps. But the main thing that worries me is how my fasciculations used to be non visible and now they are visible everywhere. They really disturb me when I try to sleep.
I’m concerned that my Lyme’s caused me to trigger the FUS mutation. Again I’m still waiting for genetic testing. But I assume I have the gene mutation because all my symptoms line up with ALS. I’m worried I have ALS due to fasciculations, dysphagia, left face weakness, hoarseness, mild spasticity, and shortness of breath.