leadtheway
Member
- Joined
- Jan 23, 2019
- Messages
- 12
- Reason
- Learn about ALS
- Country
- US
- State
- Florida
- City
- titusville
I really didn't want to post on here because I know those confirmed with this horrific disease have alot more on their plate. But I also recognize it is a great resource with alot of Knowledgeable people.
A little about me, 42/m very active and big into fitness and bodybuilding most my life. About 10 years ago had some tingling/weakness in right leg and hands/arms.. Went through all the MRi's and found herniated disc in neck..never confirmed why i felt in legs. But after traction and PT things got better and I've dealt with it on and off since. Fast forward to middle november this year. Started with same symptoms, that got a little worse but still sporadic depending on if i was sitting etc. Then developed difficulty swallowing. Went to see neuro. Ordered new MRI of brain, lumbar, Cspine and thoracic and had blood work done. Brain and thoracic came back clean (mild paranasal sinus diseason on brain mri) Lumbar showed slight herniation L4 and bilateral forimanal stenois l5/s1. Cspine is a mess (army ranger 12 years..lots of jumps and heavy rucksack) But severe bilateral stenosis, herniations and degeneration and spondylsis.
So had EMG/NCT in all 4 limbs. Diagnosed with cubital/carpal in hands but emg was clean and neuro said no muscle turnover at all. So felt good about that. Now on the swallowing issue, easily the most frustrating. I have GERD, i'm on medicine for it and i know if can cause alot of weird things.. So i had an endoscopy and Barium swallow test done.. A little narrowing and dysmotility on bottom 3rd of esophagus but nothing the dr seemed concerned about given my gerd and age.
I've tried to explain exactly my symptoms and they look at me like I'm speaking swahili. First, I don't choke on anything. I can eat solids or liquids, just feels like my throat is tight. When chewing i get this anxiety that I won't be able to swallow, but when i do, it goes down ok.. Sometimes i need a sip of drink on dry stuff but nothing much. Sometimes its worse than others and sometimes i barely notice. I notice more when just swallowing nothing. The other thing i noticed is my voice sometimes gets scratchy. But noone has complained of slurring. My tongue gets like this numb feeling sometimes. It's in the middle and sometimes the tip (i also have geographic tongue) Told neuro about it and he looked at tongue and said he didn't see anything concerning like fasciculations. I can move my tongue around and in and out and seems normal other than the pain. I also have widespread fasiculations but I'm not that concerned about that as I expect with the spine issues
Sorry for such a winded backstory. All that just to ask, With bulbar onset, how do most start noticing symptoms.. Do any of mine seem similar?
Thanks so much in advance
A little about me, 42/m very active and big into fitness and bodybuilding most my life. About 10 years ago had some tingling/weakness in right leg and hands/arms.. Went through all the MRi's and found herniated disc in neck..never confirmed why i felt in legs. But after traction and PT things got better and I've dealt with it on and off since. Fast forward to middle november this year. Started with same symptoms, that got a little worse but still sporadic depending on if i was sitting etc. Then developed difficulty swallowing. Went to see neuro. Ordered new MRI of brain, lumbar, Cspine and thoracic and had blood work done. Brain and thoracic came back clean (mild paranasal sinus diseason on brain mri) Lumbar showed slight herniation L4 and bilateral forimanal stenois l5/s1. Cspine is a mess (army ranger 12 years..lots of jumps and heavy rucksack) But severe bilateral stenosis, herniations and degeneration and spondylsis.
So had EMG/NCT in all 4 limbs. Diagnosed with cubital/carpal in hands but emg was clean and neuro said no muscle turnover at all. So felt good about that. Now on the swallowing issue, easily the most frustrating. I have GERD, i'm on medicine for it and i know if can cause alot of weird things.. So i had an endoscopy and Barium swallow test done.. A little narrowing and dysmotility on bottom 3rd of esophagus but nothing the dr seemed concerned about given my gerd and age.
I've tried to explain exactly my symptoms and they look at me like I'm speaking swahili. First, I don't choke on anything. I can eat solids or liquids, just feels like my throat is tight. When chewing i get this anxiety that I won't be able to swallow, but when i do, it goes down ok.. Sometimes i need a sip of drink on dry stuff but nothing much. Sometimes its worse than others and sometimes i barely notice. I notice more when just swallowing nothing. The other thing i noticed is my voice sometimes gets scratchy. But noone has complained of slurring. My tongue gets like this numb feeling sometimes. It's in the middle and sometimes the tip (i also have geographic tongue) Told neuro about it and he looked at tongue and said he didn't see anything concerning like fasciculations. I can move my tongue around and in and out and seems normal other than the pain. I also have widespread fasiculations but I'm not that concerned about that as I expect with the spine issues
Sorry for such a winded backstory. All that just to ask, With bulbar onset, how do most start noticing symptoms.. Do any of mine seem similar?
Thanks so much in advance
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