r/ALSorNOT

2 months into bulbar symptoms which started off as slight swallowing hesitancy has now turned into nasal regurgitation, actual swallowing issues and slow moving heavy tongue With every single meal. Coughing on even just water.

I know a lot of folks here have twitching and they think they have ALS… I’d like to offer peace of mind that if twitching is your only symptom and you don’t have any other problems, you’re most likely fine. As for those of us who are actually being referred to neuromuscular specialist because of a family history of ALS and progressively worsening bulbar symptoms, luck is not much on our side.

I am extremely frustrated because I have no diagnosis. I understand it takes space and time and progression, plus EMGs, etc., but my next EMG is not until November 17th. And yes, I am on the cancellation list already.

my SLP provides tricks and techniques such as chin tucking, only taking one sip at a time, or eating smaller bites of food, but what the doctors have failed to answer is WHY am I being required to change my eating habits when I never had issues before? It’s not normal.

This is kind of just a rant. I’ve been extremely depressed, and I work a full-time job and take care of family members, so the thought of having ALS at 29 years old is really excruciating. If I had an answer, I would just quit my job and live with a relative so I can spend as much time with my family as possible, but not knowing if I do have ALS, I still have bills to pay, so I’m stuck working at this job trying to fight through each day, not being able to eat and drink like normal, Having speech difficulties and tongue/throat changes. All while still having to wait over a month for an appointment.

Most people on here seem to have limb/twitching symptoms. Is there anyone who can chat with me regarding specifically bulbar?? please come to the front! We are in this together.

I was trying to avoid posting lol but I’m looking for some slight insight if possible. It exhausting to run down the timeline, but since my emg, almost 1 month ago, I’ve noticed a slight change. My right calf has become weaker, that I’ve noticed. I can no longer lift off my heel to a self-weight bearing toe stand. I can try but my foot instinctively leans to my smaller toes causing a loss of balance and just not able to lift with strength. I noticed the change four days ago. Driving has become a little difficult the past few days due to that instability. My calf will begin to cramp/ache while constant movement break to gas pedal. I’ve had mris, X-rays, emg. Waiting for nerve ultrasound next week, Monday. I’m curious now if they could check behind my knee or further up my leg also to spot what could be causing this sudden change. Has anyone experienced this weird change? My emg findings are in a previous post but for summary: acute-to-subacute, non-localizable, right common peroneal neuropathy, a conclusion based on the small right superficial peroneal SNAP, relatively small right peroneal CMAPs, and EMG findings of Fibs/PSWs with minimal/no chronic neurogenic changes in the right tibialis anterior and peroneus longus. There is no focal slowing across the fibular head. Thank you in advance for any insight or similar experiences.

Tbh I am here to just document and be hopeful that I may walk out of this alive.

please please share any similarities, advice, questions, positivity etc I just don’t know what to do anymore. I’m glad this sub exists so we can all help eachother.

29 F

would like to start with saying that my grandma died of Bulbar onset ALS at 60 years old. (no other ALS in the family that we know of But my symptoms are eerily similar to what she experienced and it’s eating me alive)

timeline of my bulbar symptoms: super fast only 2 months in with a lot of issues. Started with lump in throat feeling that quickly turned into issues with saying words with “S” “SH” “Z” and “TH” sounds. Also bigger words with multiple syllables always get slurred or twisted up. Then began the swallowing hesitation and consistent quick cough after liquids bc it felt like something went down wrong pipe. Feel like I have developed a lisp and have issues speaking that feel like need excess effort or concentration to coordinate my mouth properly. noticed tongue “excitability“ and some minor twitching/movement and when trying to make certain movement or flex it, it quivers a lot. a huge issue now is nasal regurgitation almost every single time I eat or drink ANYTHING. it does not come all the way out of my nose, it just feels like material is high in the back of my throat like right above and I have to snort it down to dislodge it and it will shoot down my throat.

Tests done so far:

modified barium swallow study- result showed mostly normal but bad transient penetration into larynx with thin liquid with NO aspiration.

Five separate general neuro exams that checked for upper and lower motor neuron signs- results have always been normal. a couple of them also checked my tongue and bulbar area. They thought the twitching and quivering was odd, but they did not see ALS-type fasciculations Although agreed that they did not know what could be causing the problems.

Speech Language Pathologist- notes from consult show overall “functional“ but obvious signs of dysphasia and evident left sided tongue weakness compared to the right side. he looked extremely concerned about this and said to bring that up to my neurologist but said that overall at this time it seems a little bit okay. I will be seeing him every other week to monitor. No atrophy noted although I personally feel like there is.

i also have shortness of breath and VERY easily winded. Pulmonary test was normal though, with MILD supine breath strength issue.

I had an EMG already on only the right side extremities that was normal. (the reason why I got this done was because I have had a lot of other weird neuro symptoms for a long time but tests never showed anything. (intermittent issues of sensory, balance, brain fog, severe muscle fatiguability that has caused exercise intolerance and lack of stamina and some weakness among other things)

Myasthenia gravis blood testing ALL normal (even Musk)

Brain and spine MRI with contrast normal

other basic blood tests normal as well.

Esophogram normal

they said they feel that they have exhausted all their options/tests and have now transferred me to neuromuscular specialist, which is super scary..

I have EMG appointment on November 17th for the Bulbar region, phrenic nerves, and the left side extremities.

I pray I am going to be okay

thank you for reading if you have made it this far :)

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.