Worried about bulbar symptoms

BeLikeJoePera

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Joined
Dec 11, 2024
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2
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Learn about ALS
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Country
US
State
NV
Very concerned about my current symptoms and would appreciate any comments/advice you wonderful folks have.

2014: started having limb fasciculations perceived weakness most in the left arm and leg after an extremely stressful event, saw a neurologist then a neuromuscular specialist who conducted NCS/EMG on all four limbs and found only a stray fasciculation with no other concerns

2015: symptoms persist and had another NCS/EMG on all four limbs performed by the same specialist, given diagnosis of benign fasciculation syndrome (BFS)

2016: symptoms still persisting, had a NCS/EMG on all four limbs performed by another neuromuscular specialist (I had moved) who said it was normal and confirmed BFS

2017 - mid 2024: had one more NCS/EMG on all four limbs performed by the same specialist, it was normal, and he discharged me from his clinic; took many people's advice on here and stopped reading the forums and worrying about my symptoms, and my symptoms completely resolved until July 2024

July 2024: sudden substernal chest pain, went to local emergency department then saw a cardiologist who cleared be from cardiovascular issues, told me to focus on my GERD and possible esophageal spasms; found to have lost some muscle in the right pectoral and some of my right intercostals

August 2024: my symptoms reappear hard and heavy, dramatic fasciculations everywhere (except tongue) and perceived limb weakness; MRIs brain, cervical spine, and thoracic spine significant for mild spondylosis in both spine areas and mild disc herniation at C6-C7

September 2024: having globus sensation and being aggressive at managing my GERD, upper endoscopy by GI specialist significant for proximal presbyesophagus and distal irritation from GERD, biopsies normal; presbyesophagus blamed on suspected anterior cervical osteophytes but MRI cervical spine didn't show this; NCS/EMG of all four extremities performed by the same neuromuscular specialist who did my previous one in 2017 and everything was "normal"

October and November 2024: Limb symptoms largely resolve but having a gradually worsening globus sensation regardless of GERD management

December 2024: Throat symptoms now clearly worse with intermittent painful tightness in right aspect of my throat near my Adam's apple and the tip of the Adam's apple appears slightly skewed to the right. Swallowing saliva only is possible by produces a lot of "clicking" noises, gurgling, and sometimes pain along the right side of my throat. Oddly enough, drinking water and solids can make the pain and tightness a little bit better for a short period. But I can feel my bolus of food/water "dump" into my stomach and this is causing some pretty significant abdominal pain at time. Also noticed that my voice has become somewhat hoarse and it fatigues the more I use it. Feel that I sometimes have slurred speech but probably just stumbling over words due to my throat tightness and hoarseness. Limb symptoms come back with a vengeance after I feel that my right hand has the "split" appearance. Also having fasciculations/tightness in my right jaw and facial muscles. Went to my same neuromuscular specialist yesterday, he said my hand was just skinny and not "split" as he didn't appreciate any atrophy. No abnormal clinic exam findings but wants me to do a bulbar EMG due to my symptoms and having never done one before. Told me that the chances that this is bulbar ALS is low but of coarse said anything is possible. EMG will take place after Christmas due to scheduling availability. In the meantime, I'm cleary anxious but trying to keep a rational head.

My sincere apologies for the ridiculously long post, but would like your comments on this scenario as I described it, as I greatly appreciate and respect your opinions and advice. Thank you kindly in advance.
 
I would see an ENT and consider a new mattress or pillow, maybe a sleep study or checking out your sleep with a wearable. I don't think you have ALS. Also, a second opinion on managing your GERD couldn't hurt.
 
Thank you for your reply, my sleep has been awful lately largely due to my difficulty swallowing saliva and my anxiety. My specialist also recommended an ENT evaluation and I have one scheduled after the New Year (first appointment available).

Forgot to mention some bio details: I'm a 43 year old male with no family history of ALS

Does it seem prudent for me to blame my current fasciculations and perceived weakness on my BFS, even if it's now involving the left side of my face? It just seems that the limb ten weeks ago would have picked up something.

And the stomach pain after eating doesn't seem consistent with ALS. I just feel like I got hit hard with all these symptoms in the in the past week, especially when my limb symptoms resolved and disappeared in Oct and Nov.
 
No doubt, BFS can cause fascics anywhere and anytime.

Stomach pain after eating should be evaluated by your internist or gastro. And as I say, a second opinion on best to manage the GERD might not go amiss.
 
I have balbar als.....you loose control of your jaws...no tightning...no pain....just inability to control your facial muscles..I can eat and swallow but it is extremely hard to chew the food even in small pieces...I bite my cheeks and lips frequently and have no pain in stomach as digestion. Is not a symptom.....I am on a feeding tube and cannot make any sounds at all because I cannot close my lips to even swallow liquids or use a straw.....breathing can be tough but again experience no pain. I have what I refer to as a dead tongue it does not move side to side I our out..have to push food with a spoon to side of mouth to try to get it close enough to the back of mouth to swallow it..
 
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