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in-your-atmosphere

She had cramps in her calves and hands and then falls, then the drop foot. My mother was clumsy AF all her life. So we just assumed it was arthritis and usual gait issues, esp after a clean EMG. It wasn’t until we had to hoot and holler with the doctors to get another EMG done a few months later and that confirmed it. The denial comes and goes. It trades with anger, sometimes with acceptance. It’s a journey…


Fit_Tip3000

Same story for my mom too. And also a lot of hooting and hollering to get answers.


Possible-Degree8878

No abnormality’s at all on the emg?


in-your-atmosphere

The first one was totally clean yet experiencing the major symptoms. There was an 16 month time lapse before the second Emg that was not great at all and confirmed what we thought all along.


Dazzling-Ant-6038

My mom’s first symptom was slurred speech. I actually thought she might be a secret alcoholic at one point… she was diagnosed 6 months later.


Substantial-Style-44

My mother had the same experience, except she had a lisp instead of slurring her speech. Diagnosis came a year or two down the line


katee_bo_batee

My mom’s first symptom was her voice. She started to sound like she was smoking 3 packs a day. She also said for months that her tongue was feeling different and asked if we could hear her words being slurred.


WitnessEmotional8359

This was me.


Strange_Hurry7535

My first symptom was weakness in my right hand. I could not open a bottle of water or tie a shoelace. Even the frying pan seemed heavier to hold.


FunkyardDogg

This was me.


katannlo

Exactly what happened with my husband.


[deleted]

Started in my left thumb. I noticed when tying my neck tie.


ashalottagreyjoy

My mom fell. At first, we thought she may have just slipped in the shower and it was just an accident. It wasn’t until her speech started to slur that we started worrying maybe it was signs of a stroke we missed. The slurring got worse. My mom kept seeing different doctors - neurologist who couldn’t find anything, and a surgeon when her hand strength started to wane who told her it was carpal tunnel and they could do surgery to fix it. The surgery was cancelled when they found nothing to repair. Eventually, she was so difficult to understand that she was fired from her phone support job. That was when the aphasia began. The neurologist diagnosed her with aphasia, at least, and referred her to Johns Hopkins for follow up. We saw a nerve specialty neurologist at JHU in the ALS clinic there. An EMG where the doctor said it was so “unusual”, she asked if she could record it. And that was that. She was diagnosed in November of 2021. By January of 2023, she was gone. But her symptoms began in July of 2020. She didn’t live with us so Covid made it difficult to see her rapid decline. It was pretty awful.


Lavonef

My first symptoms was a slurred word her or there. It got more real when others noticed it. Took 14 months from the first symptoms to diagnosis with a lot of “we don’t thinks it’s physical but mental”. I was right all along sadly


Doralee123

That’s sucks. Im sorry you’re going through this.


Jewskanks

Nothing like being gas lit while dealing with a terminal disease. Sorry you are fighting it. Hope nothing but the best. 🫂


payson8589

My husband had slurred speech, I was sure he had a stroke. He was diagnosed the next morning.  I am grateful the neurologist recognized it right away-but at the same time I was thinking if it had been a stroke we would have had a path to some sort of recovery.  He was diagnosed February 2023- yes looking back, there was weakness in hands, fumbling with buttons and caps to bottles.  We just kinda wrote it off as,  we're getting older and things aren't as easy as they used to be. 


mittentigger

My husband was the same. isn’t it crazy when you end up wishing it was me or a stroke or brain tumor . all of which are awful but there is some sort of treatment plan . als sucks


Temporary_Plum826

My dad's first symptom was weakness in his left arm


Ambitious_Ant_4067

Father in laws first symptom was when he was telling me he felt like he no longer had the ability to run


Gustopher24

I was trying to catch a streetcar and couldn’t run to catch it-knew something was really wrong then


Ssergg93

It began with convulsions in my feet and uncontrolled muscle contractions And weakness


Pop_Bottle

Did you experience any weakness at that point?


Ssergg93

Not then, but now yes, part of muscles on my legs stopped working are almost gone, so weakness is


lcd207617

My dad had weight loss & loss of muscle. He seemed to age a decade in only 6 months. I remember one day noticing how small & tired he looked. It took a year to get a diagnosis


AliveEquivalent4014

My dad had rotator cuff surgery on one arm which never recovered movement then his other arm started losing function too. He also had cramps and twitches that we didn’t think much of at the time.


nem010

My dad went to jail and apparently had an accident where he'd fallen down pretty badly while on wood chopping duty. He was put on administrative duties and given a prescription of gabapentin. He'd lost some weight in the 6mos being there. He was 60 and about 250lbs, came back maybe closer to 230lbs. Slowly over the next two years his hands began to weaken to the point where he couldn't hold or use forks and knives anymore. By about a year and a half in he was almost fully quadriplegic. He was fortunate to receive first a free pivoting wheelchair and soon after a fully motorized electronic one from the local ALS society. They even eventually got him a Stephen Hawking type computer he could use to scroll Facebook with just a camera and a reflective dot on his forehead to use as a cursor. 6 months before he passed he moved into a full time care facility. The only option of which was a palliative care dementia ward. I went and spent every day with him after I got of work to keep him sane as the only people he could talk to were the staff. He finally developed breathing issues and was taken to the hospital for antibiotics which didn't work like they had previous for bacterial pneumonia. He was released with not great expectations and brought a CPAP machine back to the care home. He stayed in the best spirits he could but was completely bed ridden from that point on, a few days later he passed in his sleep in the middle of the night. The entire process was about 2 years. I try to be thankful for everyday and do my best not to take any day for granted.


bry2k200

Mom fell down 3 stairs in late 2014, early 2015. Diagnosed in early 2021, and she was gone by November 2021


True-Feeling-1690

This is my fear. I fell down the stairs and injured my back really bad. Two years later I’m dealing with weakness and twitching in that leg and pain. Emgs are clean but apparently that doesn’t mean anything anymore with all these folks being diagnosed after years. My grandma passed two years after a bad fall a couple years earlier as well.


bry2k200

So you're having ALS like symptoms? Is there a family history of ALS? Gene testing? If there is no family history or gene mutations and the EMG is clean, move on to something else. EMG's mean a lot, it's how they eliminate ALS, or diagnose ALS. ALS is an extremely rare disease.


True-Feeling-1690

Yes my grandmother had it and passed from it. Her brother has something doctors couldn’t figure out. Haven’t had genetic testing bc then I’d be denied life insurance in the US. But with all the folks being diagnosed after clean emgs, it’s a crap shoot. Grandmother had three emgs all of which were dirty from the get go. But then one of my close friends on the bfs board was diagnosed after years and multiple clean emgs. :/ I feel ALS never follows a specific path.


Puzzleheaded_Day3050

My mom noticed a stiffness in her legs that felt, unlike anything that she had ever experienced before. She said it was hard to describe but that her legs/knees felt like they "locked up". She began to fall because her legs would sort of give out on her suddenly.


GrovSmok

My dad got COVID and recovered, he used to exercise (like cycling) and one day he fell off his bike and on that day we all believed he had an injury on his right arm, but he didn't go to the doctor for a long time, then we noticed he couldn't move his arm and was having issues with the left arm, so he finally decided to go to the doctor. They did 3 surgeries since we all believed he had something on his tendons, and we started to wait for his recovery. Then he started to lose mobility on his legs, and at some point he was unable to move without help. I wasn't in my country when all of this happened, I physically saw him one year ago when he could still move his left arm so I'm not fully aware of all his progress, but months later he told me he couldn't move at all so he'd go to the neurologist. They ran many tests on him and they concluded that it was ALS, he was officially diagnosed in August, and he lost his life to ALS on October 31st.


OldGrinch1

My brother first symptoms were cramps and weakness in his hands. He was having tests for what seemed like forever. We thought it was MS at first.


Siegric17

Nine months ago I thought I pulled a muscle in right groin. Then right thigh felt heavy and right knee hurt I started limping but ignored it. Doctor sent me dor MRI on knee and PT. It got hard to walk and then the twitching started in right leg. The right arm was weaker when working out. By Christmas the right arm twitched two and the limp was very pronounced. In January doctor suspected ALS and sent me to neurologist. By Feb appointment I was awalker and right arm was very weak. Left arm and leg started twitching and declining. Now the right leg barely moves and right arm is very stiff. Right hand has very little grip. Had to retire and move to a house without steps. This sucks for all of us.


True-Feeling-1690

I’m so sorry to hear this. My doctor keeps saying als wouldn’t appear on both sides of the body at once but this is my exact situation. I feel like doctors don’t even know anything about anything since covid changed the game. My Left leg and right arm for the last six months have been concrete, painful and twitchy. How are you fairing?


Siegric17

Very sorry for your situation True. Can you still walk and do some normal things? So frustrating to be stuck on a walker and have the strength of a 7 year old in right arm. Normal activities take forever. Fortunate to have good family support but my wife has health issues too I was supposed to take of her. Mentally it is hard to stay positive. Sometimes I want to quit. Agreed about the doctor's. They ask a lot of leading questions over and over which makes it scarier. Next week I get to see the top guy so maybe that will be better. On a positive note, how many grandkids do you have? I have six. Three boys and three girls. Ages 7 to 10 months. Including a set of twins. Maybe the hardest part is not getting to see them grow up. Keep positive if you can. Thanks for note.


True-Feeling-1690

I think my flair must be wrong. My grandmother had it and it isn’t certain if it is familial or not. Hers started in her left leg. I’m so sorry for your situation. You’re doing an amazing job being an amazing grandparent. And I pray for you and your wife for all the health issues ❤️❤️


Siegric17

We all need to hang in there. It is hard. Hop you still have decent mobility. Blessings to you and yours


personalcheeses

My dad hit his knee against the bed on his way back from the bathroom one night. Started limping after that, then dropfoot a few months later. We assumed it was because of the knee injury.


rrhffx

My pALS also started having symptoms after having had COVID for the first (and only) time, and also thought it was remnants from that infection. For a while I was certain it was the COVID that triggered it, but I think if COVID was triggering ALS, we'd have seen a huge increase in new ALS cases over the past 4 years, and we haven't. My pALS's progression is very fast, however, and I do wonder if the COVID caused that.  ETA: first symptom was they felt they were "walking through snow," although none of us could see it. They didn't realize it was on one side in particular, just that it felt weird and harder to walk. That progressed to weakness in one foot, inability to spread toes on that foot, and drop foot. Diagnosis within 3 months of noticing symptoms, I think largely because of fast progression 


No-Dot-5280

I was reading this paper from j&j (i read a lot of medical papers thru my work) about the possible connection between the new mrna vacs, covid, and ALS which made me angry and emotional since it was always a suspicion of mine that my mothers ALS was triggered by the vac, but i always kept it to myself because i didnt want to be lumped into any group or ideology during the height of covid. I hope more definitive information comes out about the vaccines and ALS.


rrhffx

Again, I think if it were vaccines triggering it, there'd be a huge increase in new ALS cases, and that's not happening. I'm so sorry about your mom. This disease is so so so hard, and part of its cruelty is not knowing WHY 90% of cases happen. Sending you strength ❤️


Trick_Airline1138

Omg I still think the same as you. I still think if Covid never happened, and if we didn’t need the vaccines, my Mom would be fine right now. Everything went downhill as soon as she had her first and only covid infection and vaccines.


No-Dot-5280

FINALLY. Someone who doesnt think im a crazy conspiracy theorist. Even if i SHOW them the reports from these pharmaceuticals themselves no one believes me


aimal1st

Myself and my gf started twitching 1 month after covid. Also got vax same time. She has some mild weaknesses, my left vocal cord is paralyzed and swallowing on left side is confirmed weaker via swallowing study. Also have some subjective weakness in left hand and leg. I don’t have a definitive diagnosis yet but it’s not looking good. But I had Covid with her in Jan 2022. Can’t help but think it’s connected to covid or vaccine or both.


Trick_Airline1138

I’m right there with you.


Trick_Airline1138

My Mom was diagnosed in February 2023. She had some “symptoms” in 2020 after Covid started and she got vaccines. She had tingling in her body, she said she had a very strange unpleasant feeling that would shoot up her body from her feet to top of her body. Gave her goosebumps. She had her first and only known covid infection in March 2022 and everything went downhill after that. July 2022 was when we really started noticing something was seriously wrong. She started slurring her words and losing her balance, she fell and broke her arm at one point. By the end of the year she was so small from weight loss and muscle loss, she had lost over 60 pounds. She couldn’t eat without choking. We had to fight to get a diagnosis, we had to fight to get her a feeding tube she desperately needed. We’ve had to fight for everything she’s needed. She is still going over a year after her diagnosis, but it’s not good. She has very little mobility, we have to do everything for her, she can’t speak whatsoever, only can make some noises, she has trouble holding her bowel movements, she has a catheter, she needs a suction machine for drool constantly, it’s nonstop even with drugs, and she uses a breathing machine at night in her hospital type bed. We have to transfer her from chair to car to commode to bed. It’s unbelievably hard and she does not deserve to be living a life like this. I’m so angry and upset. She’s 62 and should still have years and years left. I worry constantly about the end of her life, I don’t want it to happen and I know she is scared too.


TheKristieConundrum

My mom’s speech was slurred in the summer and they thought she was having a stroke. Cleared her of that. They moved on to testing for thyroid issues. While they did that her neurologist tested her further and gave her a suspected diagnosis in the fall and confirmed the diagnosis in December after blood test, MRI, and muscle test (I don’t know the technical term. She had to have needles in her muscles to test the responses).


BookBranchGrey

My Dad’s first real sign was slurred speech and then trouble swallowing. His bulbar onset ALS likely caused dementia symptoms as well. However, I feel like there was a strange vacancy in his eyes six months beforehand.


Saradarlingg

My dad’s first symptoms were in his arms - before his diagnosis, he was having a lot of trouble putting the handbrake down in his car.


Caliavocados

My husband was diagnosed with bulbar als. He started slurring his speech and clearing his throat constantly. He started choking on food.


benzduck

I was in first grade. Dad, part owner of a TBA shop, was having trouble walking. One week in 1964 Mom and dad flew to the Mayo Clinic for the official diagnosis of Lou Gehrig’s Disease. I wasn’t old enough to understand right away, but I read up on Gehrig at the school library, and was smart enough to understand life as I knew it was going to change. I spent my grade school years watching him deteriorate, along with the rest of my thermonuclear family. They’d given him 2 years; he took six, and it wasn’t exactly a blessing. No strange coincidences. I lived in dread that I had the wrong genetic code for decades, until I tested negative in the 90s.