PaulyD
New member
- Joined
- Dec 10, 2022
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- PA
- City
- Philadelphia
Hello, All
In August of 2022 I started having terrible burning sensations in tops of hands and feet (I know, points away from ALS). This spread up arms and legs and shoulders over the next 2 months.
October of 2022 I started having twitches in legs that moved to entire body within a week or two. Terrible muscle tightness and soreness in legs, feet, and hands. No clinical weakness but my legs shake going up and down steps and my fingers struggle to do things like pick up coins or type. Right foot is worse than left foot. I limp periodically. Left hand is worse than right — the “pulling” pain in fingers is unbearable at times. Terrible shoulder burning pain on both sides.
Sometimes I get a kind of “electric shock” pain throughout entire body that lasts for 30 minutes or so multiple times a day.
Then I started to notice trouble swallowing. Not choking, but food doesn’t want to go down and liquids feel like they’re going down the wrong pipe. A lot of phlegm. I’m always clearing my throat for minutes after drinking something. Dry cough. Face has patches of numbness on one side and tongue is always numb like it has a coating on it. No slurring.
I’ve had 3 MRIs and they found some T2 hyperintensities, but they think they’re just from migraines and possibly high blood pressure. Some minor disc bulging around C5 and some minor stenoisis.
I was concerned about ALS because of twitching and weakness.
Went to neuro and she wasn’t concerned at all. No clinical weakness in exam, no signs of atrophy. She only saw one quick twitch. I begged her to do an EMG and I just had that done last week — she said it was perfectly clean. She did 2 legs and 2 arms. She said she wasn’t concerned about swallowing issues because I wasn’t choking. She says clinical weakness or paralysis would be cause for concern but as of now she isn’t concerned. She has no ideas what it could be but she says she’s certain it’s not ALS.
Does any of this sound like ALS symptoms to anyone? Should I pursue this further? Am I too early in the diagnostic process? I’m very worried about the swallowing — could it be bulbar? She didn’t do a swallow test or EMG of the tongue. I’m just very scared right now and don’t know what to do next. Thank you for your input.
In August of 2022 I started having terrible burning sensations in tops of hands and feet (I know, points away from ALS). This spread up arms and legs and shoulders over the next 2 months.
October of 2022 I started having twitches in legs that moved to entire body within a week or two. Terrible muscle tightness and soreness in legs, feet, and hands. No clinical weakness but my legs shake going up and down steps and my fingers struggle to do things like pick up coins or type. Right foot is worse than left foot. I limp periodically. Left hand is worse than right — the “pulling” pain in fingers is unbearable at times. Terrible shoulder burning pain on both sides.
Sometimes I get a kind of “electric shock” pain throughout entire body that lasts for 30 minutes or so multiple times a day.
Then I started to notice trouble swallowing. Not choking, but food doesn’t want to go down and liquids feel like they’re going down the wrong pipe. A lot of phlegm. I’m always clearing my throat for minutes after drinking something. Dry cough. Face has patches of numbness on one side and tongue is always numb like it has a coating on it. No slurring.
I’ve had 3 MRIs and they found some T2 hyperintensities, but they think they’re just from migraines and possibly high blood pressure. Some minor disc bulging around C5 and some minor stenoisis.
I was concerned about ALS because of twitching and weakness.
Went to neuro and she wasn’t concerned at all. No clinical weakness in exam, no signs of atrophy. She only saw one quick twitch. I begged her to do an EMG and I just had that done last week — she said it was perfectly clean. She did 2 legs and 2 arms. She said she wasn’t concerned about swallowing issues because I wasn’t choking. She says clinical weakness or paralysis would be cause for concern but as of now she isn’t concerned. She has no ideas what it could be but she says she’s certain it’s not ALS.
Does any of this sound like ALS symptoms to anyone? Should I pursue this further? Am I too early in the diagnostic process? I’m very worried about the swallowing — could it be bulbar? She didn’t do a swallow test or EMG of the tongue. I’m just very scared right now and don’t know what to do next. Thank you for your input.
