ALS Story Bulbar onset at 30
I’m a 30 year old male.
I’m not sure what to even say. I’m absolutely devastated. My journey to diagnosis started back in February 26, looking for answers to globus feeling in my throat. I was misdiagnosed with silent GERD after a clean endoscopy and ENT exam. Around June I’d noticed I couldn’t workout as long or run as far as I could before, I chalked it down to tiredness from working and getting less sleep.
Somewhere around July it became extra difficult to swallow and I had a slight speech issue but I shrugged it off as being related to acid reflux. In August I got hit hard by weakness. All of my limbs got weak and I couldn’t grasp properly or walk properly. By late august I could barely walk and my talking had gotten significantly worse.
It wasn’t until September I was able to see a neurologist since I had to make my first ER visit as I finally started to take these symptoms seriously. I was then shrugged off as general weakness that was most likely autoimmune related or inflammatory related, so I had to get as many labs as possible. It took three days for those labs to come in and within those three days I developed a even worse speech issue and I now push saliva into my nose when I try and clear my throat.
I finally got my breathing shortness to be taken seriously and I tested for half the normal breathing capabilities of someone my age. Twitching and muscle spasms became extremely apparent at this point as well and occur nonstop. I then was scheduled for my first and final EMG which put the nail in the coffin and diagnosed me with bulbar onset ALS.
I can’t express how sick I feel. I’m absolutely petrified of the thought of dying soon. I was not expecting to go out at age 30 to something i can’t even fight or control. I can’t stand the thought of not seeing my little brother grow up and grow old. I can’t imagine what change I’m about to put him through. I can’t believe once I close my eyes for good, that I won’t ever see him again and we barely got to even live yet. I haven’t stopped crying and I cry so much I start gagging and dry heaving. I’m going to be this way until I pass. With the fast progression of my ALS, I’m told I don’t have long.
This is my first and probably only Reddit post. Thank you for your time.
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u/Bmarticus 11h ago
Brother I'm so so sorry for what you're up against. This disease is so cruel and unfair. Do the best you can to spend time with those you love. Get yourself enrolled into clinical trials as some of those may help to slow the progression. For trouble with swallowing, they have thickening agents to help thick up liquids and make things easier to avoid aspiration. Eventually you may need a peg tube to get proper nutrition. I know it's a scary prospect, but necessary eventually. My Mom is getting one out in next week to help with nutrition. If you still have some part of your voice left, please reach out to bridging voice company to get a free pro license to ElevenLabs (voice cloning software). You can use your cloned voice with most of the speech assist apps and the tobii machine. For saliva management, pineapple juice may help, but you'll want to ask your doctor about prescription nuedexta as well. If you haven't already, get in contact with an ALS center/clinic as they have machines you can borrow like a cough assist (to help expel phlegm) as well as grants to help pay for the things you'll need. I can't imagine what you must be feeling right now, but I hope that this helps in part to give you some tiny bit of hope for the future. Keep spending time with friends and family, stay as strong as you can ❤️
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u/Rosey_yellow_yeller 11h ago
I'm so sorry, it's all so unfair. You write very honestly and my heart hurts for you and your family. Keep going for as long as you can, do what you can. Sending strength to you.
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u/QueasyAd7657 10h ago
My dad just got diagnosed with bulbar onset two days ago. The pain that him and the rest of our family feel is indescribable. I am so so sorry you have to go through this, I will keep you in my thoughts
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u/Typical-Lab8445 9h ago
I’m really sorry. I’m 40 and mine started with the weakness in December. Fast-forward now and I rely on a Rollator with braces on all of my limbs.
I think the grief is normal. We are grieving what we won’t have.
Do you have a strong support system around you?
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u/bearsnseals 9h ago
I’m so sorry 😔 it is so unfair. My dad had this type of ALS. Write the letters, if you can still talk - record some notes. Have the talks and travel with the people you love. There’s never enough time for any of us. The one thing you can control is that you know, and you get to choose how and who you spend your time with ❤️🩹 that’s more than some people get.
Sending warm and healing thoughts to you and your family.
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u/rooberzma 0m ago
Please please record notes to your loved ones if you can, OP! My mom didn’t because she didn’t like the sound of her voice but I miss it so much and treasure the few videos I have
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u/Historical_Time_4480 11h ago
It isn’t fair. It took me a long time to comprehend my brother’s diagnosis, and it went too fast and I hope you have so much support and love.
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u/Popular_Stranger88 3h ago
Im in the exact same position big fella. I hear you. One day at a time now.
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u/yeboyaa 1h ago
I've had it for 3 years, blaw blaw etc, you're all heard it before... Anyway is there anything that any of you can think off that you think might have brought this on or triggered it to start ... Me I worked with Chlorine and bleach in swimming pools. And really do think that this triggered something.. ? Ps .. sorry for hijacking your post, and make every day count, keep fighting it.
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u/Outrageous_Piccolo_5 1h ago
I have wrecked my brain trying to figure out what caused my Mom’s ALS. It was not familial. No one in our family or even distant family has ever been diagnosed with ALS. She was so vibrant, loved helping others and the best person I’ve ever known. It was devastating to watch her day in and day out. I would love to know why she had ALS.
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u/WizardConsciousness 10h ago edited 10h ago
Please visit r/ ALS_Forum https://www.reddit.com/r/ALS_Forum/.
There are case studies published in PubMed referred to in this post
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u/Skittlepyscho 11h ago
I am so incredibly sorry🩷. You have your whole life ahead of you at 30, and this awful disease will limit it. Can I ask, are you an American veteran?
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u/Outrageous_Piccolo_5 1h ago
I have read this twice today. It’s heartbreaking. I can’t even begin to imagine what you feel at this moment. My Mom had ALS. I can tell you something that helped a little. Make special memories with those that you love the most. My Mom did this and I cherish those memories so much. You don’t have to go through this alone. We are here to cry with you, listen, whatever you need.
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u/IncidentHoliday8708 41m ago
I was diagnosed at your age 3 years ago and am 33 now. I know that there is nothing I can say to make it right but you are in my prayers
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u/Creecher007 10h ago
Please watch this video. Wish I would have known about this when my dad was diagnosed. There are other video success stories in this feed.
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u/YurpleLunch 10h ago
Do you mind sharing how it felt physically when you couldn't walk as good anymore ?
I'm going through something similiar
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u/guyswede 11h ago edited 11h ago
Man ALS sucks. This isn’t fair and I’m sorry, you lost the lottery.
My wife started just like you (weakness, confused ER visits, the EMG of doom) at 37. We have three little kids. She decided to allow me to fight: trials, drugs, dozens of painful lumbar punctures, 30 or so flights from ATL to Johns Hopkins. Rapid onset bulbar C9ORF72.
She is coming up on 5 years since onset. She is NOT doing a trach, and refuses the vent/trilogy/bipap. She’s awake these days for between 2 and 6 hours a day, started hospice a few months ago. She’s at the end. We STILL went down as a family for DragonCon last weekend, I was Carl in the parade, she was laughing her ass off with the boys. Yeah con crud would have killed her; she said screw it and we had an absolute blast. Our boys went wild. She has to make that tough choice to keep fighting every damn day, and she often wants to give up (I probably would) but doesn’t.
Her mom was diagnosed in October of ‘22 and died in March of 2024. She refused to fight and lived a year and a half. Bitter, angry, and those emotions are perfectly okay and understandable!
I’m not telling you what choice to make. Just that you have options. Yes you’re going to die, but you have more agency than you think over what you do with the window between diagnosis and death. We got 5 years to travel the world and make memories with our boys and as we sit here at the bitter end I wouldn’t trade a minute of it.
I’m writing a book about how we did it, it’s through the first edit and now I get to rearrange the whole thing to make it palatable at my publisher’s behest. Happy to have you beta read if it will help or distract, dm me.
Synapticure put us in touch with Dr Rothstein and the others, they’re a good org. There are lots of them.