Rickyman310
New member
- Joined
- Dec 25, 2022
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
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- US
Hello everyone. I am here writing this because the title of this thread alone describes my situation. I’m a 25yo male who has been diagnosed so far with Functional Neurological Disorder and Benign Fasciculation Syndrome and still have the fear of potentially having ALS. My symptoms began this way:
In 2017, i’ve noticed I had trouble lifting objects that I usually did not have and things would slip out of my hands easily. I would ocassionally have to stop writing as my dominant hand (right) would cramp easily. I felt a lot weaker and also had trouble with my right leg as it would fatigue easily and had pain when lifting up my foot. Also felt a tickling sensation on right bicep, left forearm, and right leg.
In 2018, my calves would cramp for no reason. I drank lots of water. Both my hands and weakness on both my right leg and right arm was progressing. However the right side was worse and felt I had to limp sometimes with pain and discomfort on right butt talk. I began to have sharp lower back pain mid 2018. I also began to slur and my tongue was fatiguing after eating meals.
2019: my low back pain got worse, my grip and strength became weaker in all areas I previously described. This is where things get weird:
I began to have frequent and urgency when it came to urination and abdominal pain. My extremities felt freezing cold but were normal in temperature when touched. Following this my legs began to feel a lot weaker and my slurring and eating became much weaker. I began to have painful headaches as well. In April 2019, I remember the whole right side from my head down to the right side of my foot went numb and began to have excessive chills for a few minutes. Weirdest feeling. No more frequent urination but now have trouble defecating.
May 2019: Normal Mri of whole spine and brain, and an emg was performed and it came out normal. However, the fasciculations started after the EMG.
July 2019: New neurologist repeat EMG throughout whole body and it came out clean/normal. Referred to UCLA Neuromuscular Department.
Skip to 2020: symptoms: Over emotional laughter & crying, brain fog, fasciculations throughout whole body, sudden numbness tingling in all extremities at random but all mostly affecting right side, constipation, slurring and trouble swallowing. Weakness progressed in all affected areas. Lifting my right foot after work outs or long walks began to become very difficult.
April 2020: EMG performed only on right side and right side of lower spine. Came out clean/normal.
2021: All symptoms present and progressed, however, I began to notice atrophy and dents on my right butt muscle and right calf muscle. My neuromuscular Dr. examined my right calf dent and says he believes its congenital. In August 2021, I was seen by a neurologist at Cedar Sinai to examine the right buttock muscle and he said it looked normal. Even the Head of the neuromuscular and ALS clinic walked in and said the same. I told them about my symptoms, but what was worse during the time was my low back pain, right arm weakness, grip on both hands, and right leg weakness. However, in the clinical exam, because I passed it and was able to walk on my toes and heels I’m fine. I tried to explain that I can pass these test but if it went on a few seconds longer my shin would give out and finger strength would give out as well as my right knee when lifting my leg. They told me they agree with BFS and Functional Neurological Disorder.
2022: My joints in my feet, ankles and wrist crack constantly non stop with any movement. My low back pain is sharper than ever, my tongue and jaw fatigue far easily, and my right leg is losing movement. My right arm bicep tickles and looks atrophied in comparison to my left. Fasciculations are wide spread still and constant. Grip is more poor especially on left hand. I get random chills on certain parts of my body including parts of my face. Can’t smile much especially on the right side of my face. I noticed the inner thigh muscle on my right leg is nearly gone. My left forearm and wrist are thinner than my right.
Dec 2022: Met with my neuromuscular neurologist from UCLA again. I told him all my symptoms are there still and have progressed. However the main issue i wanted to get to him was my right leg and sharp low back pain that doesn’t go away. Examined and noted:
- Difficult motor control on right leg and slight give away. MRI of spine required to rule out demyelinating diseases. No evidence of ALS or mimic disease. Follow up EMG January 2023. However, my neurologist also described this as a peace of mind therapeutic EMG as my neurologist doesn’t believe it’s ALS.
I’m very scared as I have read many instances of ALS being diagnosed with a clean EMG prior even multiple but later on getting the dirty EMG and ALS diagnosis later. My 2020 EMG, Someone doing their fellowship performed the EMG with my neuromuscular Dr. directing them. Could they have skipped the spots that was important? I said i have trouble lifting my foot, but they did skip Perennial nerve/muscle. Should ALS have shown up already? Was it done poorly? I’m frightened and don’t look forward to my emg next year. Was also notified that another neuromuscular neurologist at another ALS clinic is willing to review my case. I’m nervous/scared.
In 2017, i’ve noticed I had trouble lifting objects that I usually did not have and things would slip out of my hands easily. I would ocassionally have to stop writing as my dominant hand (right) would cramp easily. I felt a lot weaker and also had trouble with my right leg as it would fatigue easily and had pain when lifting up my foot. Also felt a tickling sensation on right bicep, left forearm, and right leg.
In 2018, my calves would cramp for no reason. I drank lots of water. Both my hands and weakness on both my right leg and right arm was progressing. However the right side was worse and felt I had to limp sometimes with pain and discomfort on right butt talk. I began to have sharp lower back pain mid 2018. I also began to slur and my tongue was fatiguing after eating meals.
2019: my low back pain got worse, my grip and strength became weaker in all areas I previously described. This is where things get weird:
I began to have frequent and urgency when it came to urination and abdominal pain. My extremities felt freezing cold but were normal in temperature when touched. Following this my legs began to feel a lot weaker and my slurring and eating became much weaker. I began to have painful headaches as well. In April 2019, I remember the whole right side from my head down to the right side of my foot went numb and began to have excessive chills for a few minutes. Weirdest feeling. No more frequent urination but now have trouble defecating.
May 2019: Normal Mri of whole spine and brain, and an emg was performed and it came out normal. However, the fasciculations started after the EMG.
July 2019: New neurologist repeat EMG throughout whole body and it came out clean/normal. Referred to UCLA Neuromuscular Department.
Skip to 2020: symptoms: Over emotional laughter & crying, brain fog, fasciculations throughout whole body, sudden numbness tingling in all extremities at random but all mostly affecting right side, constipation, slurring and trouble swallowing. Weakness progressed in all affected areas. Lifting my right foot after work outs or long walks began to become very difficult.
April 2020: EMG performed only on right side and right side of lower spine. Came out clean/normal.
2021: All symptoms present and progressed, however, I began to notice atrophy and dents on my right butt muscle and right calf muscle. My neuromuscular Dr. examined my right calf dent and says he believes its congenital. In August 2021, I was seen by a neurologist at Cedar Sinai to examine the right buttock muscle and he said it looked normal. Even the Head of the neuromuscular and ALS clinic walked in and said the same. I told them about my symptoms, but what was worse during the time was my low back pain, right arm weakness, grip on both hands, and right leg weakness. However, in the clinical exam, because I passed it and was able to walk on my toes and heels I’m fine. I tried to explain that I can pass these test but if it went on a few seconds longer my shin would give out and finger strength would give out as well as my right knee when lifting my leg. They told me they agree with BFS and Functional Neurological Disorder.
2022: My joints in my feet, ankles and wrist crack constantly non stop with any movement. My low back pain is sharper than ever, my tongue and jaw fatigue far easily, and my right leg is losing movement. My right arm bicep tickles and looks atrophied in comparison to my left. Fasciculations are wide spread still and constant. Grip is more poor especially on left hand. I get random chills on certain parts of my body including parts of my face. Can’t smile much especially on the right side of my face. I noticed the inner thigh muscle on my right leg is nearly gone. My left forearm and wrist are thinner than my right.
Dec 2022: Met with my neuromuscular neurologist from UCLA again. I told him all my symptoms are there still and have progressed. However the main issue i wanted to get to him was my right leg and sharp low back pain that doesn’t go away. Examined and noted:
- Difficult motor control on right leg and slight give away. MRI of spine required to rule out demyelinating diseases. No evidence of ALS or mimic disease. Follow up EMG January 2023. However, my neurologist also described this as a peace of mind therapeutic EMG as my neurologist doesn’t believe it’s ALS.
I’m very scared as I have read many instances of ALS being diagnosed with a clean EMG prior even multiple but later on getting the dirty EMG and ALS diagnosis later. My 2020 EMG, Someone doing their fellowship performed the EMG with my neuromuscular Dr. directing them. Could they have skipped the spots that was important? I said i have trouble lifting my foot, but they did skip Perennial nerve/muscle. Should ALS have shown up already? Was it done poorly? I’m frightened and don’t look forward to my emg next year. Was also notified that another neuromuscular neurologist at another ALS clinic is willing to review my case. I’m nervous/scared.