Sushimann
New member
- Joined
- May 22, 2018
- Messages
- 2
- Reason
- Learn about ALS
- Country
- US
- State
- NJ
- City
- New Brunswick
Hello,
I'm a 43 year old male that started twitching in 1999. I saw a couple of Neuros back then and had an EMG that was clean. Diagnosis was simply benign fasiculations.
Fast forward to late 2013, my voice started to have this weird vibration/rattle at the end of a sentence that occurred randomly a few times. Around this time I also had this involuntary swallow/spasm in my throat that would only occur in the early mornings when I was half awake lying in bed. At Thanksgiving there was a bowl of gravy and couldn't think of the word gravy - this was startling at the time.
Starting in January of this year, the following symptoms began occurring:
- Increase of twitching in face and body
- body shaking when doing push ups
- need to clear throat after every meal, sometimes when talking
- decrease in muscle mass in arms shoulders and chest
- drop things more frequently
- arms fatigue quickly
- occasional liquids going down wrong pipe
- cognitive issues such as forgetfulness, saying words in wrong order
- loss of strength at gym, 15lbs feels like 30lbs
- developed major depression
- shortness of breath when speaking
- stuttering more frequently
- jaw fatigue when chewing
- bite lip,tongue, cheek more frequently
- voice volume was soft and barely audible when speaking a few times
I've seen 4 Neurologists, Pulmonologist , Speech Therapist since February.
Lung function test in March was normal.
Modified Barium Swallow in March was normal.
Neuro 1 was horrible - he barely examined me and said No ALS.
Neuro 2 was well regarded, did a physical exam that he said was normal. He would not do an EMG for me calling it a waste.
Neuro 3 was a colleague of Neuro 2 who I saw in March. He agreed to perform an EMG of my right leg and arm that was clean. I pushed him to do my tongue/chin due to my bulbar symptoms but he wouldn't because he lacked experience with the tongue.
Neuro 4 was an ALS specialist at an accredited ALS center in NYC in April. On physical exam he noticed right sided facial weakness. He performed an emg of right leg, buttock, parapspinals, right arm and tongue. Pinched nerve found in right elbow and the rest was clean. Diagnosis BFS.
Apparently the facial weakness is something I have had for at least a few years as the Neuro saw it on my driver's license. He wanted me to get an MRI to make sure there was no lesion. The MRI showed a few dots in my left frontal lobe that aren't linked linked to anything specific.
The ALS Neuro believes I was born with the facial weakness but I don't agree. I believe I acquired it. I called him to ask if he would do another EMG on my face and he wouldn't. He said "There is 0 percent chance you have ALS. Absolutely no chance whatsoever". I asked if I was an atypical, slow moving bulbar case and he said "bulbar almost always starts with slurring which you don't have and we even checked your tongue and it was normal".
I feel like I have an atypical case of bulbar ALS and the start of frontal lobe dementia. I went back to Neuro #2 who specializes in dementia and all he did was ask about my symptoms and say I have somatization. He was very dismissive.
On top of this, nobody in my family thinks this is happening due to the fact that I saw 4 Neuros and have the normal Pulmonary and Swallow test. I am prone to anxiety so my family believes my symptoms are a result of it or somatization of my mind playing tricks. "All those neuros can't miss ALS"
I almost lost my wife of 16 years due to my anxiety over my belief I have bulbar ALS and dementia and all the doctors visits. I was and am distraught about the thought of my kids having this condition since it would not be sporadic ALS. My 9 year old son's muscles shake when he is nervous just like mine do. I feel overwhelmed with guilt since I had read there were no cases of BFS turning into ALS before making the decision to have children.
Should I see another ALS specialist for an EMG of my face ? If I am correct and acquired the facial weakness does that mean ALS is likely based on my other symptoms ?
Sorry for the long post, just wanted to share my history. Thank you for your time!
I'm a 43 year old male that started twitching in 1999. I saw a couple of Neuros back then and had an EMG that was clean. Diagnosis was simply benign fasiculations.
Fast forward to late 2013, my voice started to have this weird vibration/rattle at the end of a sentence that occurred randomly a few times. Around this time I also had this involuntary swallow/spasm in my throat that would only occur in the early mornings when I was half awake lying in bed. At Thanksgiving there was a bowl of gravy and couldn't think of the word gravy - this was startling at the time.
Starting in January of this year, the following symptoms began occurring:
- Increase of twitching in face and body
- body shaking when doing push ups
- need to clear throat after every meal, sometimes when talking
- decrease in muscle mass in arms shoulders and chest
- drop things more frequently
- arms fatigue quickly
- occasional liquids going down wrong pipe
- cognitive issues such as forgetfulness, saying words in wrong order
- loss of strength at gym, 15lbs feels like 30lbs
- developed major depression
- shortness of breath when speaking
- stuttering more frequently
- jaw fatigue when chewing
- bite lip,tongue, cheek more frequently
- voice volume was soft and barely audible when speaking a few times
I've seen 4 Neurologists, Pulmonologist , Speech Therapist since February.
Lung function test in March was normal.
Modified Barium Swallow in March was normal.
Neuro 1 was horrible - he barely examined me and said No ALS.
Neuro 2 was well regarded, did a physical exam that he said was normal. He would not do an EMG for me calling it a waste.
Neuro 3 was a colleague of Neuro 2 who I saw in March. He agreed to perform an EMG of my right leg and arm that was clean. I pushed him to do my tongue/chin due to my bulbar symptoms but he wouldn't because he lacked experience with the tongue.
Neuro 4 was an ALS specialist at an accredited ALS center in NYC in April. On physical exam he noticed right sided facial weakness. He performed an emg of right leg, buttock, parapspinals, right arm and tongue. Pinched nerve found in right elbow and the rest was clean. Diagnosis BFS.
Apparently the facial weakness is something I have had for at least a few years as the Neuro saw it on my driver's license. He wanted me to get an MRI to make sure there was no lesion. The MRI showed a few dots in my left frontal lobe that aren't linked linked to anything specific.
The ALS Neuro believes I was born with the facial weakness but I don't agree. I believe I acquired it. I called him to ask if he would do another EMG on my face and he wouldn't. He said "There is 0 percent chance you have ALS. Absolutely no chance whatsoever". I asked if I was an atypical, slow moving bulbar case and he said "bulbar almost always starts with slurring which you don't have and we even checked your tongue and it was normal".
I feel like I have an atypical case of bulbar ALS and the start of frontal lobe dementia. I went back to Neuro #2 who specializes in dementia and all he did was ask about my symptoms and say I have somatization. He was very dismissive.
On top of this, nobody in my family thinks this is happening due to the fact that I saw 4 Neuros and have the normal Pulmonary and Swallow test. I am prone to anxiety so my family believes my symptoms are a result of it or somatization of my mind playing tricks. "All those neuros can't miss ALS"
I almost lost my wife of 16 years due to my anxiety over my belief I have bulbar ALS and dementia and all the doctors visits. I was and am distraught about the thought of my kids having this condition since it would not be sporadic ALS. My 9 year old son's muscles shake when he is nervous just like mine do. I feel overwhelmed with guilt since I had read there were no cases of BFS turning into ALS before making the decision to have children.
Should I see another ALS specialist for an EMG of my face ? If I am correct and acquired the facial weakness does that mean ALS is likely based on my other symptoms ?
Sorry for the long post, just wanted to share my history. Thank you for your time!