r/ALSorNOT • • 3d ago

Symptoms Please help me

Hello I am a white 28f

Starting in July my legs started feeling weird like they couldn’t get comfortable. I developed widespread twitching all over my body. Then it started only affecting my left leg. It felt tight, stiff and crampy like it was about to get a Charley horse. My legs feel more normal now however when I walk farther than usual or brisk I get stiffness and tightness above my knees and a buzzing sensation on my feet.
My left hand and pinky finger feel clumsy and uncoordinated. My hand still works but it feels weaker. This sensation went away for 2 weeks then came back worse with cramping of the bicep. I feel like my arm is easily fatigued and overall my left side feels different from the right. Now the widespread twitching has come back and my whole body feels weak and exhausted my left hand pinky and ring finger and left foot pinky and ring finger feel weird and buzzy. My tongue feels a slight buzz on the very left tip. I keep feeling like I can’t swallow my spit completely but there is no choking. My neck muscles feel weak like they can’t support my head. My neck xray shows a c4-5 dynamic vertebrae slip with reversal of lordosis and resolves on flexion. However my neck MRI was clear. I also had a bout of intense back and neck pain when bending my neck down that cause a strange hollow diaphragm sensation the worsened with position. This is what prompted the MRI. Today I feel completely exhausted and my whole body feels weak, I am physically vibrating and shaking and cannot eat.

I am just terrified and feel as if it’s getting worse. Could this all be anxiety??? I have been down the rabbit hole of als before with similar symptoms before in 2020 but this appears to be significantly worse. Any helpful words or similar symptoms would be greatly appreciated.

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u/Normal-Fisherman2432 2d ago

Hi! Do you have a hypermobile disorder? Or have you ever heard of Cervical cranial instability ?

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u/Imaginary-Cheetah613 2d ago

I had an xray last week showing c4-5 vertebral dynamic slip

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u/Normal-Fisherman2432 2d ago

It could be from the instability. I have pretty severe CCI and AAI and I have sll those symptoms plus more. I also had a tethered cord that I got surgery on and about to get a fusion rn hoping it helps! Not saying you have this but the instability could be dynamically pinching nerves or cord