Bulbar symptoms? 34 year old female

Joined
Oct 13, 2016
Messages
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Learn about ALS
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Country
US
State
NJ
City
Old bridge
Coming here to see if my bulbar symptoms sound like bulbar onset ALS. I was here many years ago almost 8 years to be exact and was cleared by a neuro. Although, I hope that doesn’t discredit this post getting any replies.

Symptoms started about 2 months ago with a feeling of my head being hard to hold up and left side of neck feeling of something being pulled when I turned to the left. After a vacation to Disney I came back and had horrible headaches at the base of my skull with visual blurriness and neck/shoudler pain.

I had a CT in the ER which said I may have Chiari malformation and I made an appt with a neuro to follow up. In the meantime the headaches subsided and right sided weakness and twitching, muscle cramping started.

Neuro noted the difference in my thumb muscles (which I always had but looks more pronounced now) and said she would do an emg of my right arm to rule out ulnar nerve neuropathy but didn’t have a concern otherwise.

MRI was normal. And I’m awaiting a follow up next week with neuro. In the meantime she gave me muscle relaxers ive taken on and off and I asked for anxiety meds which I took for a week and then stopped because of horrible nausea and inability to eat. And I saw a chiropractor to try something else who agreed there was a slight difference in muscle bulk of my right back/shoulder muscles.

The muscle twitching and cramping continues especially in the right side of muscles that appear smaller. And right arm is shaky and weaker, although I can still do things I need to it’s much harder to do them especially picking up my children.

In the last 2 weeks it feels like I have marbles in my mouth when I try to speak, tongue feels clumsy and some of my words come out slurred as well as fluids not going all the way down, a little comes back up and sits in my throat until I swallow again and feels like it’s coming just up to my nose. My tongue tingles and lower jaw feels like there’s bugs crawling around in it. I feel some twitching in the left of my jaw under the bone, as well as the muscle in my is smaller on that side than the right when I bite down. Jaw feels tired and strained when smiling for too long or chewing.

I’ve had chronic fatigue for sometime but PCP always writes it off as working nights and having small children because labs are always normal.

Most concerning is the left jaw/bulbar symptoms and right sided back muscle difference.
 
No, this doesn't sound like ALS at all. We are all asymmetric and Disney rides could certainly torque your neck.

However, for your own safety, the last type of clinician I would visit with a possible Chiari malformation would be a chiropractor.

Working nights can certainly catch up with you. It might give more information to track your sleep with a wearable.

I would also ask your dentist about a night guard.
 
Thank you so much for your reply. I realize my emg will give me confirmation but this sensation of fluids not going down and needing to swallow again/feeling them slowly go down my esophagus/feeling them come up to my nose is very disturbing and constant. My soft palate seems much lower than it’s ever been and now I realize that’s why I’ve felt like something is at the back of my throat constantly. When I say ahhh it does raise but its fixed position is pretty much touching my tongue.

I’m growing more and more exhausted and fatigued, as soon as I wake up I feel as though I could fall over from fatigue and need to sit in bed. My question is could ALS progress this quickly in the last month since my neuro appt? My whole right side is affected, my right arm can barely apply pressure to write and right leg is unsteady. My swallowing is also affected (fluids go up to my nose and take a while to go down) and feels hard to hold my head up and only feels better when I lay in bed. I guess my question is has anyone had only one whole side affected at the same time and bulbar and spinal symptoms at the same time?

Thinking back I’ve been growing more easily fatigued for months prior to this and voice was harder to project. My right back muscles are obviously smaller on my right side and I will show neuro. My neck looks gaunt. My bilateral lower reflexes are very brisk and she noted that.
 
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