Is this ALS or not?

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. ❤️

ALS (or Motor Neurone Disease which we call it in Australia) is diagnosed by a process of elimination. There is not one test for ALS, your neurologist has to eliminate other possible
causes of your symtoms before making a diagnosis. I was diagosed two months ago, and while
initially a shock I am now exploring possible treatment options by discussing them with my neurologist.Please don't believe everything you read on the internet or support group. Some people have some very strange and useless ideas. Trust your doctor, not some weirdo who posts "cures", especially if they ask you for money.

What is your age? And, just like the previous posters suggested, “See a Neuro ASAP.” Doctors have difficulty with these type dxs, so you know nobody can really rule it out or make you feel better about your worry. Praying, you will be well again very soon. 🙏

Hi i was really looking for some reassurance though if this sounds like it.

Hi im 35. Does this sound like it though

@scaredone9088, I know someone who has constant twitching that was dx with benign fasciculation syndrome. So, those don’t always mean ALS. I have been having all kinds of symptoms both tremors, restless legs and autonomic symptoms for over a year, I’ve been concerned with MSA, but no doctor has dxed it. So, I understand your stress and worry. Get a Neuro appt immediately, because it takes time to get one I’ve been told there aren’t enough of them. If the appt is out aways get on the wait list, and call often for cancellations. You need to get in so you can start feeling in control and that hopefully will help your anxiety and stress. There are a bunch of these neuro diseases that overlap and then some things are just from your body’s response to infection etc. Try to be positive. And, please post here as to how it’s going for you. You are young so hopefully it’s nothing serious. Prayers for you. 🙏

@ellu, Prayers for you as you navigate this tough road. Your upbeat attitude is so good, may it follow you constantly, and may you have a mild case that progresses slower than ever thought possible. God bless you, 🙏

AlS manifests itself with weakness and twitching in one spot of the body then migrate to adjacent areas and slowly move around the body… usually starts in the arm, leg or hand. if it starts out random twitching all over the body or in different areas is usually indicative of something different such as BFS…. i’ve had random twitches all over my body for the last seven years. I have no muscle weakness or wasting….. I exercise and I can bench press 200 pounds….. i’m 67 years old. The twitching started when I was around 60.