confusedDad2
New member
- Joined
- Mar 25, 2019
- Messages
- 7
- Reason
- Learn about ALS
- Country
- US
- State
- NJ
- City
- NJ
Thank you all for taking the time to read my post and I would appreciate any advice or knowledge you can pass on. I have read the "before you post sticky".
So this all started the the 1st week in Dec, I woke up 1 morning and had a persistent twitch in my left thigh. It prob went on 4-5 days before I googled "Thigh Twitching" and up popped about 25 ALS sites. I unfortunately went down the rabbit hole and read the stories, symptoms, watched the youtube videos, etc.
The twitching then went to the arches of my feet and then my calves (persistently). Now i have random twitches all over (back, neck, arms, hands, etc). I went to my PCP on Jan 2nd and she gave me a basic strength test and said its al ldue to anxiety and stress but if I didnt believe her (she could see it on me face) then she'd refer me to a Neuro.
I went to the Neuro on Jan 21st and told him what was going on and be basically laughed at me. Said I was too young (im 34)and in good shape and "didn't look at all like I would have ALS". He did a quick test of my grip and reflexes on my knees and told me he'd due an EMG for my peace of mind. EMG was done 2 days later by another Neuromuscular Dr on my right Thigh, tibia, calf, foot, deltoid, tricep, forarm, hand, Thoracic Paraspinal, and L4 paraspinal. He said No fasciculations were present nor denervation/reinervation changes.
I had made another Neuro appt for 1/28 because of the dismissive nature of the 1st nero. He gave me a full clinical exam and didn't see any weakness and my reflexes were normal.
About a week after I started having some issuse with my mouth/tongue. It 1st started burning on the sides and across the top of it. It also felt swollen and thick and I thought my speech has been effected. Its still persistently feels odd or off and i feel like my speech is slurred or I mispronounce words, especially with TH or S endings. I've also been clearing my throat a ton and have a hard time getting up the mucus.
So basically my question is, does any of this in your expierences resemble Bulbar Onset, even after the EMG? I'm trying to educate myself the best I can so i can try and move past this. I called the neuro to ask my questions but they are dismissive and just say no signs of MND. I dont want to waste your time nor try an offend anyone, I'm just looking for your experiences or knowledge.
So this all started the the 1st week in Dec, I woke up 1 morning and had a persistent twitch in my left thigh. It prob went on 4-5 days before I googled "Thigh Twitching" and up popped about 25 ALS sites. I unfortunately went down the rabbit hole and read the stories, symptoms, watched the youtube videos, etc.
The twitching then went to the arches of my feet and then my calves (persistently). Now i have random twitches all over (back, neck, arms, hands, etc). I went to my PCP on Jan 2nd and she gave me a basic strength test and said its al ldue to anxiety and stress but if I didnt believe her (she could see it on me face) then she'd refer me to a Neuro.
I went to the Neuro on Jan 21st and told him what was going on and be basically laughed at me. Said I was too young (im 34)and in good shape and "didn't look at all like I would have ALS". He did a quick test of my grip and reflexes on my knees and told me he'd due an EMG for my peace of mind. EMG was done 2 days later by another Neuromuscular Dr on my right Thigh, tibia, calf, foot, deltoid, tricep, forarm, hand, Thoracic Paraspinal, and L4 paraspinal. He said No fasciculations were present nor denervation/reinervation changes.
I had made another Neuro appt for 1/28 because of the dismissive nature of the 1st nero. He gave me a full clinical exam and didn't see any weakness and my reflexes were normal.
About a week after I started having some issuse with my mouth/tongue. It 1st started burning on the sides and across the top of it. It also felt swollen and thick and I thought my speech has been effected. Its still persistently feels odd or off and i feel like my speech is slurred or I mispronounce words, especially with TH or S endings. I've also been clearing my throat a ton and have a hard time getting up the mucus.
So basically my question is, does any of this in your expierences resemble Bulbar Onset, even after the EMG? I'm trying to educate myself the best I can so i can try and move past this. I called the neuro to ask my questions but they are dismissive and just say no signs of MND. I dont want to waste your time nor try an offend anyone, I'm just looking for your experiences or knowledge.