Is this ALS or not?

Posted by scaredone9088 @scaredone9088, 1 day ago

Thank you in advance for taking the time to read and reply to my post. I am afraid I have bulbar als or regular ALS. Here's why.

All year I had a history of fasiculations, leg stiffness and heaviness and some difficulties with swallowing meats (sensation of it getting stuck in throat)

Then in the Spring, at the onset before a bad infection I got sensory symptoms (tingling, burning along with the heaviness, finger spasticity and weakness as well as some mild dysarthria)

Then a systemic illness exploded which I know is unrelated to ALS, I developed night sweats and a GI infection and neurological symptoms kind of shifted

from there, neurological symptoms exploded and joined forces from the original non sensory symptoms of leg heaviness and fasiculations to clonus, head jerking, worse fasiculations, drool, issues with drool pooling in my mouth, eye issues, burning in legs, speech issues, wet and cold sensations around mouth, phlegmy voice and painful stiff neck.

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

Zebra | @californiazebra | 1 day ago

That must be so scary for you. Have you seen a neurologist and had nerve testing? Result?

I thought I had ALS ten years ago at 56 when suddenly I couldn’t eat anything without aspirating, trouble chewing and controlling food in my mouth, trouble swallowing. I lost 25 pounds in a month as I became afraid to eat and was just drinking protein drinks. My heart started flipping out from rapid weight loss and lack of food. Two month wait for a neurologist. I already had a history of massive fasciculations, muscle cramps, numbness, tingling, dizziness, legs stop working on stairs, random shooting pains, RLS, pain from pressure when resting my legs on something, fingers quivering, toes started going crazy like a player piano, etc. I already knew I had a rare hereditary neuropathy with pressure palsies (HNPP) but the sudden non-stop dysphagia (occasional in the past) scared me. I didn’t have the drooling but sometimes when I’m chewing something it gets too saucy so I can’t control the food and spit it out. I had the EMG/NCS testing that’s been abnormal since I was first tested at 21 (now 66). I was also tested for MS, myasthenia gravis as my chewing muscles (and other muscles) get weak and fatigued easily. In the end two different neurologists working together ruled out ALS, MS, MG and determined it was still part of my HNPP although the dysphagia is not typical with that, it’s possible. My son has HNPP too (diagnosed w/genetic testing) with some similar and some different symptoms. He has some swallowing difficulties but different than mine.

You definitely have something neurological going on, but there are so many different neurological disorders that have bizarre symptoms that I hope this gives you hope that it may not be ALS. Are all of your neuro symptoms new or do you have a history of some?

Please see a neuromuscular neurologist if you haven’t done so already. 10 years later I still have the dysphagia ( and all the other stuff) but know which foods cause the most issues, keep my head tipped down when eating to avoid aspiration, etc. Frustrating and life altering but not deadly. Prayers for you. ❤️