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Convinced it's ALS

I am a 25 year old female. I have had muscle twitching for 4 years now. It's progressed to trouble swallowing and I have dents in places that used to twitch. When I smile only one side of my face goes up now. I have seen 2 ALS specialist that say I don't have it I have had 3 emgs that have come out clean so far. I am convinced because things continue to get worse over time and there are parts of my body that have dents. Food gets stuck in my throat which has been proven through a barium swallow test. Any opinions would be very helpful.

ALS?

I personally don't have ALS but I joined this group to get information for my mom. She is 56 history of RA, migraines, psuedosezuires(mostly has with migraines). Back at end of 2016 she started having field vision problems that resolved and went to blurred vision. 2017 she got a tickle in her throat which lead to severe slurred speech, problems swallowing and jaw weakness. She is strong as an ox works as a CNA! Normal MG bloodwork, normal MRI and normal Emg. Her Neurologist said no MG cause her bloodwork was normal Im So frustrated!

Worried

Im very worried l may have ALS l already have lupus and sjogrens. My symptoms started off with pins and needles in my legs which travelled throughout my body. I now have charlie horses and twitching in my legs mainly calves 24/7. Im 68 this year im yet to see a neurologist as im scared. My muscles in legs are burning as im typing this. I do not have numbness yet.

Tongue weakness

Hi, I’m a 34yr mom of two beautiful kids. This past May I noticed speech issues, as if I couldn’t articulate the words. Over time it’s changed to more slow speech. I have had mri, emg (leg, arm and tongue) , two egd’s (dx GERD/reflux) and spinal tap all came back good. Seen speech therapist yesterday and she noticed tongue weakness and I’m breathing in the wrong areas during speech. Like I’m almost out of breath at times when speaking and i have a weak cough when asked to cough. The only other symptoms I have are cold intolerance and anxiety of course.

So much uncertainty and hurdles in life

I'm not 100% sure how to even begin, so I'll go to the beginning. I'm 30 years old, (I live in a very small community) and have always lived a fast paced life. "Tell me I can't and I'll prove I can" type of personality.
About 6 months ago I began noticing I was becoming easily fatigued, just run right down. I chalked it up to working 6 days a week, caring for my husband and 2 children, while running a small hobby farm (goats, chickens, ducks and rabbits.)

D/C feeding tube

Hi,

I am new to this forum.

I've been a caregiver for my mother, who has ALS and frontotemporal dementia, for a little over 7 years now. She has been immobile for many years now. She continued to react to different things, but she is no longer able to do so.

New member

I'm not sure how to start. Diagnosed in Feb 2018. Started clinical trial 2 weeks ago. Heading to Mayo in Rochester in a few days. I'm 60 and healthy all my life. Never used drugs or smoked and almost never used alcohol. I guess it doesn't matter to ALS. STRUGGLED with severe depression and anxiety for 4 months. Waiting. Like someone said, would you have lived your life differently if you knee sooner. I felt I knee what I had 5 months ago. All the tests and waiting were unbearable. Just looking for some friends to offer support and advice and I will return the favor.

Triligy, how long to use before invasive

My husband was diagnosed with ALS in May of 2017. Since then he has declined at a very fast rate. He is on a trilogy machine 24/7 and is complete quadriplegic. How long can we expect the trilogy to work for him?

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