LL1199
New member
- Joined
- Nov 5, 2023
- Messages
- 2
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
Hello all,
First off, massive respect to this forum and community for the help it provides.
I am a 29 year old man (American) who has experienced extreme change for the last 7 months. It is worth noting that I had a sensation in my brain following a neck massage on May 8th that caused me to buckle over and rendered me unable to speak for about 10 minutes. However I was feeling poorly for about a month prior to this massage.
Since April my symptoms have been numerous and seemingly getting worse as the weeks pass. If you could let me know or give me any sort of help regarding on if it sounds like ALS, I would be very grateful. I cannot share the eye twitch because videos do not seem allowed but I will share photo of facial palsy.
Misc notes: My largest concern is the weight loss, - I am a slender person as is but I now weigh 136 lbs, for reference I am 5 foot 10. In March I weighed 142 pounds. There was also an unidentified antibody connected to neuronal tissue found in my blood, it was not found in the CSF. The doctors say it is of "unknown significance and most likely not relevant."
- Does ALS present w/ facial weakness?
- Do autoantibodies have any correlation to ALS?
- Has anyone had an incident like this neck massage that lead to this disease?
My symptoms are as follows:
- Eye twitch of the lower right eyelid (ongoing since May). The twitch at times spreads to the left eye and upper left lip
- Cranial nerve palsy has developed ( I have tested extensively for lyme disease w/ no concrete positive)
- Bone pain in my shins (like a dull aching)
- Shooting cramp like pain that comes and goes in feet and legs
- Burning sensation in wrist
- Extreme fatigue
- Eyes itch, burn and ache.
- "Floaters" in my vision
- Fasciculations across most major muscle groups in my body
- Shooting pain that comes and goes down legs.
- Atrophy of muscles ( My limbs look smaller to me)
- Major neuropsychiatric changes....extreme anger, sadness, inability to focus etc....(I had to quit my job)
Tests I have had done:
Multiple Brain MRI
EMG/NCS in August showed no sign of MND according to the report
PET/CT of head
Lumbar puncture x2 w/ results from second one pending.
Thank you so much for reading,
- Ben
First off, massive respect to this forum and community for the help it provides.
I am a 29 year old man (American) who has experienced extreme change for the last 7 months. It is worth noting that I had a sensation in my brain following a neck massage on May 8th that caused me to buckle over and rendered me unable to speak for about 10 minutes. However I was feeling poorly for about a month prior to this massage.
Since April my symptoms have been numerous and seemingly getting worse as the weeks pass. If you could let me know or give me any sort of help regarding on if it sounds like ALS, I would be very grateful. I cannot share the eye twitch because videos do not seem allowed but I will share photo of facial palsy.
Misc notes: My largest concern is the weight loss, - I am a slender person as is but I now weigh 136 lbs, for reference I am 5 foot 10. In March I weighed 142 pounds. There was also an unidentified antibody connected to neuronal tissue found in my blood, it was not found in the CSF. The doctors say it is of "unknown significance and most likely not relevant."
- Does ALS present w/ facial weakness?
- Do autoantibodies have any correlation to ALS?
- Has anyone had an incident like this neck massage that lead to this disease?
My symptoms are as follows:
- Eye twitch of the lower right eyelid (ongoing since May). The twitch at times spreads to the left eye and upper left lip
- Cranial nerve palsy has developed ( I have tested extensively for lyme disease w/ no concrete positive)
- Bone pain in my shins (like a dull aching)
- Shooting cramp like pain that comes and goes in feet and legs
- Burning sensation in wrist
- Extreme fatigue
- Eyes itch, burn and ache.
- "Floaters" in my vision
- Fasciculations across most major muscle groups in my body
- Shooting pain that comes and goes down legs.
- Atrophy of muscles ( My limbs look smaller to me)
- Major neuropsychiatric changes....extreme anger, sadness, inability to focus etc....(I had to quit my job)
Tests I have had done:
Multiple Brain MRI
EMG/NCS in August showed no sign of MND according to the report
PET/CT of head
Lumbar puncture x2 w/ results from second one pending.
Thank you so much for reading,
- Ben
