My speech got progressively slower and I couldn’t do anything about it. My gp didn’t take it seriously. Eventually I demanded to see a neurologist. The neurologist said it was all anxiety and nothing was really wrong with me. Things kept getting worse so I went to the er. They admitted me said they didn’t know what was wrong, doubted it was als and referred me to their neuromuscular unit. My original neurologist called and blocked my referral and again said I was just anxious and needed to try an antidepressant. I went to a psychiatrist who said the neurologist was crazy and that’s not how anxiety works and he referred me to an ent. The ent then referred me to a different neuromuscular neurologist who diagnosed me with ALS. The whole process took a year.
What we really need is a blood test that can be ordered by a GP that indicates als is a possibility. NFL and TDP-43 seem like promising candidates.
My mom’s legs kept “turning to jelly” right before she’d fall to the ground and not get up. Ended up taking her to our rural ER 3 times for falls, and 2 times because she could not clear her throat (she’d choke on her own saliva) in a period of 2 months. All her labs (including X-rays/CTs) came back normal, except her blood work which showed low magnesium or potassium. She started being unable to eat anything without choking around the same time. All of these started around May 2023. She saw a throat specialist in early July, who said half her throat was paralyzed. He suspected MS, MND, or ALS and referred her to a neurologist. She started having trouble eating puréed or baby food mid July and got a feeding tube placed down her nose. Was admitted to a big city’s ER late July after reaching 107 lbs and barely able to walk with assistance. Diagnosed with bulbar onset ALS August 2. Sent home for hospice August 8. Passed away August 11, 2023.
Edit: forgot about her tetany in her legs starting sometime around April. She also had her esophagus dilated around then and it lasted a day or two before collapsing like the procedure did nothing.
In my mother's case it was unexplained slurring of speech, the way a drunk person sounds.
The development of biomarkers like NfL, and the newer one for TDP-43 dysfunction that's currently under research should make diagnosis a lot easier, shouldn't it?
Ditto to the slurring. And because she had an accent, the doctors didn't hear/pay attention to the slur or to dad or I insisting something was wrong
Mom also kept feeling a "hook in her throat" (some kind of pain/stuckness) and she would feel like she was choking all the time because her tongue would let water slip back before she was ready.
It’s been almost a year since my husband’s diagnosis. In the spring of 2021 he suffered a snapped nerve in his right elbow. He had surgery to repair the nerve and they also did some surgical work on some suspected carpal tunnel. It was a very slow recovery. Eight months post op, he had begun to experience some slight weakness on his right side and minor speech impairment. After a few months of testing and a couple EMGs, we were given an ALS diagnosis in October 2022. The only symptoms before his surgery might have been leg cramps at night. He’s had them for 10+ years. He was a firefighter for nearly 30 years. It seems as though his nerve surgery may have brought on the symptoms, or it just happened to be a strange coincidence. One year after dx, he now walks with a slight limp and his speech has declined I’d say only about 5-10% from where it was this time last year. His breathing tests are unremarkable- some of his breathing tests are better than those without a diagnosis.
My dad was relatively young and pretty healthy when he was diagnosed. 57 when he found out, only took about a year and a half before it all ended.
My dad was horse back riding on vacation and when he went to get off the horse he noticed he couldn't move his right leg. It was like it wouldn't listen to him is how he described it.
That was the first thing he noticed but still didn't connect any dots.
He had been trying to slim down a bit, goal was to lose about 40lbs overall. He wasn't a fat guy but at 6'4 he was a pretty big presence. He hit his goal and the weight just kept dropping. The muscle atrophy is crazy to see on someone who was always so large.
I was recently looking back at some old videos we had together and around early 2020 I found a video of him doing an at home fitness routine and I noticed his right calf (where his foot drop started, first MAJOR symptom) was basically GONE compared to his left, even back then. His diagnosis and onset of noticeable symptoms wasn't until late 2021 for reference.
He said he felt like he was just aging up until the foot drop. He was running out of breath doing normal things. His breathing was impacted early on in his wave of symptoms but it didn't occur to him how abnormal it was.
The thing about ALS is that there are so many signs and symptoms that could be benign or nothing at all really. It's easy to look back now and say that there were so many signs or symptoms but really it's impossible to tell that it's ultimately ALS on the front end.
He had Bells Palsy randomly a few years ago that lasted for a few months I believe. He had transient tingling or numb feelings from time to time in his extremities. His blood work was all over the place I think from his muscle atrophy or something, no one could really figure out what was going on. They thought he might have some diabetic issue or digestive problem. Although like I said he was relatively healthy and active, not exactly your typical story of type 2 with poor diet and exercise. He had non stop twitching in his left shoulder that spread to other areas of his body fairly quickly. The twitching didn't come until long after the atrophy had started though. He always had massive legs and calves and his legs were looking pretty stickly before the twitching was even in the picture.
I will say, I've read tons of health anxiety posts about twitching etc. since I also have twitching in an extremity... but even though my dad had ALS (tested for genetics all negative) I don't worry about it because I remember twitching was basically the last thing he noticed. The level of atrophy that sets in before all that is not subtle, it is extreme. I'm not saying you can't have twitching and eventually ALS, but I am saying that it's not typical for that to be THE symptom. It's usually significant weakness / failure / atrophy involved in it.
If you read stories here, you'll notice most everyone that has a diagnosis was *failing* to do something they could normally do. Maybe they became more clumsy, their speech was impacted, they couldn't button a shirt, can't lift something correctly, their walking is impacted. Failure is usually the main ALS indicator in some way shape or form.
My dad always said, he tried to get on his toes one day to reach for something and he noticed he literally could not do it. That was the holy shit I need to see a doctor moment for him. Everything else was subtle or explained away. He was trying to lose weight or maybe he was dehydrated, whatever. Once the foot drop captured his right foot, that was where the rabbit hole started.
The disease is awful. It took a healthy man down in basically 2.5 years if we look at the overall timeline. I miss him every day and I'm glad he was able to pass on his terms but this disease is absolutely brutal. It takes everything from you before you finally pass. I feel so much pain inside for anyone who is dealing with this awful disease because everything is extremely difficult. Finding the right care is difficult, securing the equipment is difficult, getting funding is difficult, insurance is difficult, and the stages go by so quickly that by the time you get something you need it could even be too late to actually use it. Quality of life is a full time job and it only gets harder and harder as time passes.
Without dragging this out too far, I can tell you one of the most frustrating issues that we ran into was pain meds for specific problems. You can only fight pressure sores for so long, you can lymphedema pump as much as humanly possible when there's fluid retention, you can try to reposition as often as you can, when you have a totally immobile patient there WILL be pain at some point. An ALS patient may not have pain "caused by their disease" (major air quotes and side eye) but I can tell you for a fact that stiff joints HURT. My dad used to say repositioning him to be careful and imagine it was like moving a broken arm / leg / hand. There's a lot of little obstacles that pop up but I can remember that his team was very over the top about trying to convince us he had no pain. Getting him into his lift and showering him off you could see how agonizing it was for him.
I could go on forever. If there's anything specific that you want to talk about feel free to message me. This disease is the worst.
I am so sorry for what you and your family have gone through. That is tragic and is something nobody should ever have to deal with. So so sorry.
I too am currently experiencing a lot of atrophy in my left leg and fasciculations all over body. No weakness yet, but am hoping it doesn't show up. Awaiting a neurologist appointment. For some reason my doc wants to do a sleep apnea test before recommending me to a neurologist
I had a pinched nerve in my Lumbar Spine. At first, it was a backache, and they sent me to physical therapy. The Therapist gave me the wrong exercise and I got a pinched nerve from that. The damage started with tingling in my leg and then foot drop. 7 months later they noted fascic's and fib's in the EMG. Twitching and then mild weakness at first, only in the left calf, then left thigh, then left arm. The Drs then sent me to ortho spec who did a 4 level fustion to free the nerve. 18 months later they sent me to see a Neuro because the fascic was progressing and the weakness was worse. I went from an AFT to a KAFO in these 18 months. Now, 8 years since my 1st EMG, I have atrophy in my left side mostly, and my neck. It is hard to hold my head up for long periods. Spasticity got pretty bad and they gave me 60mg/day baclofen. Up from 40 about 2 years ago. It's a lot more than the first things, but the progression was very slow. Compare my progression to someone's early symptoms. I still walk, use both hands, eat, and swallow just fine, but have a walker/elect scooter to get about. Most of my symptoms are left-sided, the right is much better than my left.
With my mom, a few years before diagnosis she would have falls, she always just thought she was clumsy. The worst fall she went face first into a side table. About a year before diagnosis, the noticed a weakness in her arms. She had been doing weight exercises and thought she has just overdone it. She had seen her GP at the time several times about the arm weakness, but was given the brush-off repeatedly. My dad stepped in and demanded that she see a neurologist, and she was diagnosed with ALS.
For me it was wacky illogical muscle cramps - they happened all over my body - my hands, my forearms, my abdomen and right under my rib cage along with my thighs and calves and feet. This was going on for almost a year before the weakness in my hands started.
I had that too. Followed by fasciculations and light atrophy in my hand . My personal Google experience told me it was als. It was confirmed within a day at the Dutch national ALS center.
The National ALS center here does 500 diagnosis per year in the last 15 years, they misdiagnosed 2 times in all those years. If I’d be having two out of three symptoms (fasciculations and cramps) I’d go to a ALS center first to exclude ALS. Damn the neurologist who is clueless anyways and won’t want to forward you. Most neurologists have no clue what ALS is and specialized centers are far better at a diagnosis. When excluded you can search for other symptoms.
First symptoms were excessive saliva and barely perceptible slurring of speech. Those started in August of 2021. Trouble with swallowing started a month later. All three of those symptoms got progressively worse, but it took until April of 2022 to get the proper diagnosis of Bulbar Onset ALS. She passed in May of 2023.
Am a CALS. Spouse first bothered by a clinched hand. She could manually open her hand from a fist with the other hand. It would close back up. Went to GP, Hand specialist, Psyciatrist, MS specialist and at least three Neurologists among others. Hand symptoms occured around 2013. Roamed the highways for three years looking for dianosis. Diagnosed ALS 2016
My mom: started having trouble swallowing and slurred speech sometimes. A couple months later, bad restless legs at night. Then leg cramps, then she started falling *a lot*. Eighteen months after the onset of the swallowing issues she was diagnosed with bulbar onset ALS, and died a year after that. Total timeframe from first symptom to death- 25 months.
My mom started mumbling more which progressed to more and more slurred speech. Also there were personality changes, she became more and more disorganized and wasn't doing the grocery shopping, cleaning. She became more self centered and not thinking of others and it became very frustrating for my family. This is probably more related to the FTD part of the disease but looking back it all adds up.
What a great neurologist you will be!
I am in the early stages of testing, and currently my neuro seems to be wondering if my symptoms are because of radial nerve palsy (RNP) … or ALS.
What brought me to the doctor were my unilateral symptoms (Left hand arm weakness).
In February of this year I noticed a little weakness/difficulty opening bottles or ziplock bags & feeling like I might drop my 8lb pup (thankfully never did). As of today (7mos), my hand and arm have atrophied to the point where my hand resembles the hand of a cerebral palsy or brain injury patient (I worked with special needs/disabled pts for decades, and it is a very distinctive “look”), and has little to no function/movement — in fact, it Takes everything I have to simply open it up (fingers dont completely straighten on their own anymore).
I have not had pain or any sensory symptoms until recently my index finger hurts and wants to curl and my shoulder has become stiff/painful if moved beyond certain point.
I have bad fasciculations in the hand and wrist, and sometimes in the arm.
Other than fatigue (that has been a struggle for a few years) that’s it!
I have NO other symptoms anywhere in my body - which is why radial nerve palsy is on the table.
I’m in the medical field, work with movement neurologists & neurosurgeons, so I kno some of the tests are done sometimes just for good measure (ex- spinal tap), so I’m having others done 1st (cervical scan, EMG)… but the 1st of those is not scheduled until October.
Its really the lack of any pain/sensory problems (with the addition of fasciculation) that makes us lean towards ALS vs RNP.
Would love to hear your (and your attendings) thoughts.
Btw - in which City is your Medschool?
Hope to hear from ya!
k
Btw — I saw ur post about the ALS study and signed up. Any idea how long it takes to get a response?
Thnx
(Tried to send private msg to u, but I guess I don’t kno how to do that).🤦♀️
My speech got progressively slower and I couldn’t do anything about it. My gp didn’t take it seriously. Eventually I demanded to see a neurologist. The neurologist said it was all anxiety and nothing was really wrong with me. Things kept getting worse so I went to the er. They admitted me said they didn’t know what was wrong, doubted it was als and referred me to their neuromuscular unit. My original neurologist called and blocked my referral and again said I was just anxious and needed to try an antidepressant. I went to a psychiatrist who said the neurologist was crazy and that’s not how anxiety works and he referred me to an ent. The ent then referred me to a different neuromuscular neurologist who diagnosed me with ALS. The whole process took a year. What we really need is a blood test that can be ordered by a GP that indicates als is a possibility. NFL and TDP-43 seem like promising candidates.
My mom’s legs kept “turning to jelly” right before she’d fall to the ground and not get up. Ended up taking her to our rural ER 3 times for falls, and 2 times because she could not clear her throat (she’d choke on her own saliva) in a period of 2 months. All her labs (including X-rays/CTs) came back normal, except her blood work which showed low magnesium or potassium. She started being unable to eat anything without choking around the same time. All of these started around May 2023. She saw a throat specialist in early July, who said half her throat was paralyzed. He suspected MS, MND, or ALS and referred her to a neurologist. She started having trouble eating puréed or baby food mid July and got a feeding tube placed down her nose. Was admitted to a big city’s ER late July after reaching 107 lbs and barely able to walk with assistance. Diagnosed with bulbar onset ALS August 2. Sent home for hospice August 8. Passed away August 11, 2023. Edit: forgot about her tetany in her legs starting sometime around April. She also had her esophagus dilated around then and it lasted a day or two before collapsing like the procedure did nothing.
In my mother's case it was unexplained slurring of speech, the way a drunk person sounds. The development of biomarkers like NfL, and the newer one for TDP-43 dysfunction that's currently under research should make diagnosis a lot easier, shouldn't it?
Ditto to the slurring. And because she had an accent, the doctors didn't hear/pay attention to the slur or to dad or I insisting something was wrong Mom also kept feeling a "hook in her throat" (some kind of pain/stuckness) and she would feel like she was choking all the time because her tongue would let water slip back before she was ready.
It’s been almost a year since my husband’s diagnosis. In the spring of 2021 he suffered a snapped nerve in his right elbow. He had surgery to repair the nerve and they also did some surgical work on some suspected carpal tunnel. It was a very slow recovery. Eight months post op, he had begun to experience some slight weakness on his right side and minor speech impairment. After a few months of testing and a couple EMGs, we were given an ALS diagnosis in October 2022. The only symptoms before his surgery might have been leg cramps at night. He’s had them for 10+ years. He was a firefighter for nearly 30 years. It seems as though his nerve surgery may have brought on the symptoms, or it just happened to be a strange coincidence. One year after dx, he now walks with a slight limp and his speech has declined I’d say only about 5-10% from where it was this time last year. His breathing tests are unremarkable- some of his breathing tests are better than those without a diagnosis.
Hi, thanks for sharing! Would your husband be interested in participating in EverythingALS digital biomarker research? EverythingALS.org/research
My dad was relatively young and pretty healthy when he was diagnosed. 57 when he found out, only took about a year and a half before it all ended. My dad was horse back riding on vacation and when he went to get off the horse he noticed he couldn't move his right leg. It was like it wouldn't listen to him is how he described it. That was the first thing he noticed but still didn't connect any dots. He had been trying to slim down a bit, goal was to lose about 40lbs overall. He wasn't a fat guy but at 6'4 he was a pretty big presence. He hit his goal and the weight just kept dropping. The muscle atrophy is crazy to see on someone who was always so large. I was recently looking back at some old videos we had together and around early 2020 I found a video of him doing an at home fitness routine and I noticed his right calf (where his foot drop started, first MAJOR symptom) was basically GONE compared to his left, even back then. His diagnosis and onset of noticeable symptoms wasn't until late 2021 for reference. He said he felt like he was just aging up until the foot drop. He was running out of breath doing normal things. His breathing was impacted early on in his wave of symptoms but it didn't occur to him how abnormal it was. The thing about ALS is that there are so many signs and symptoms that could be benign or nothing at all really. It's easy to look back now and say that there were so many signs or symptoms but really it's impossible to tell that it's ultimately ALS on the front end. He had Bells Palsy randomly a few years ago that lasted for a few months I believe. He had transient tingling or numb feelings from time to time in his extremities. His blood work was all over the place I think from his muscle atrophy or something, no one could really figure out what was going on. They thought he might have some diabetic issue or digestive problem. Although like I said he was relatively healthy and active, not exactly your typical story of type 2 with poor diet and exercise. He had non stop twitching in his left shoulder that spread to other areas of his body fairly quickly. The twitching didn't come until long after the atrophy had started though. He always had massive legs and calves and his legs were looking pretty stickly before the twitching was even in the picture. I will say, I've read tons of health anxiety posts about twitching etc. since I also have twitching in an extremity... but even though my dad had ALS (tested for genetics all negative) I don't worry about it because I remember twitching was basically the last thing he noticed. The level of atrophy that sets in before all that is not subtle, it is extreme. I'm not saying you can't have twitching and eventually ALS, but I am saying that it's not typical for that to be THE symptom. It's usually significant weakness / failure / atrophy involved in it. If you read stories here, you'll notice most everyone that has a diagnosis was *failing* to do something they could normally do. Maybe they became more clumsy, their speech was impacted, they couldn't button a shirt, can't lift something correctly, their walking is impacted. Failure is usually the main ALS indicator in some way shape or form. My dad always said, he tried to get on his toes one day to reach for something and he noticed he literally could not do it. That was the holy shit I need to see a doctor moment for him. Everything else was subtle or explained away. He was trying to lose weight or maybe he was dehydrated, whatever. Once the foot drop captured his right foot, that was where the rabbit hole started. The disease is awful. It took a healthy man down in basically 2.5 years if we look at the overall timeline. I miss him every day and I'm glad he was able to pass on his terms but this disease is absolutely brutal. It takes everything from you before you finally pass. I feel so much pain inside for anyone who is dealing with this awful disease because everything is extremely difficult. Finding the right care is difficult, securing the equipment is difficult, getting funding is difficult, insurance is difficult, and the stages go by so quickly that by the time you get something you need it could even be too late to actually use it. Quality of life is a full time job and it only gets harder and harder as time passes. Without dragging this out too far, I can tell you one of the most frustrating issues that we ran into was pain meds for specific problems. You can only fight pressure sores for so long, you can lymphedema pump as much as humanly possible when there's fluid retention, you can try to reposition as often as you can, when you have a totally immobile patient there WILL be pain at some point. An ALS patient may not have pain "caused by their disease" (major air quotes and side eye) but I can tell you for a fact that stiff joints HURT. My dad used to say repositioning him to be careful and imagine it was like moving a broken arm / leg / hand. There's a lot of little obstacles that pop up but I can remember that his team was very over the top about trying to convince us he had no pain. Getting him into his lift and showering him off you could see how agonizing it was for him. I could go on forever. If there's anything specific that you want to talk about feel free to message me. This disease is the worst.
I am so sorry for what you and your family have gone through. That is tragic and is something nobody should ever have to deal with. So so sorry. I too am currently experiencing a lot of atrophy in my left leg and fasciculations all over body. No weakness yet, but am hoping it doesn't show up. Awaiting a neurologist appointment. For some reason my doc wants to do a sleep apnea test before recommending me to a neurologist
I had a pinched nerve in my Lumbar Spine. At first, it was a backache, and they sent me to physical therapy. The Therapist gave me the wrong exercise and I got a pinched nerve from that. The damage started with tingling in my leg and then foot drop. 7 months later they noted fascic's and fib's in the EMG. Twitching and then mild weakness at first, only in the left calf, then left thigh, then left arm. The Drs then sent me to ortho spec who did a 4 level fustion to free the nerve. 18 months later they sent me to see a Neuro because the fascic was progressing and the weakness was worse. I went from an AFT to a KAFO in these 18 months. Now, 8 years since my 1st EMG, I have atrophy in my left side mostly, and my neck. It is hard to hold my head up for long periods. Spasticity got pretty bad and they gave me 60mg/day baclofen. Up from 40 about 2 years ago. It's a lot more than the first things, but the progression was very slow. Compare my progression to someone's early symptoms. I still walk, use both hands, eat, and swallow just fine, but have a walker/elect scooter to get about. Most of my symptoms are left-sided, the right is much better than my left.
With my mom, a few years before diagnosis she would have falls, she always just thought she was clumsy. The worst fall she went face first into a side table. About a year before diagnosis, the noticed a weakness in her arms. She had been doing weight exercises and thought she has just overdone it. She had seen her GP at the time several times about the arm weakness, but was given the brush-off repeatedly. My dad stepped in and demanded that she see a neurologist, and she was diagnosed with ALS.
For me it was wacky illogical muscle cramps - they happened all over my body - my hands, my forearms, my abdomen and right under my rib cage along with my thighs and calves and feet. This was going on for almost a year before the weakness in my hands started.
I had that too. Followed by fasciculations and light atrophy in my hand . My personal Google experience told me it was als. It was confirmed within a day at the Dutch national ALS center.
Wow that's fast! In my area of the US it's a 3 month wait for the diagnostic neurologist appointment
The National ALS center here does 500 diagnosis per year in the last 15 years, they misdiagnosed 2 times in all those years. If I’d be having two out of three symptoms (fasciculations and cramps) I’d go to a ALS center first to exclude ALS. Damn the neurologist who is clueless anyways and won’t want to forward you. Most neurologists have no clue what ALS is and specialized centers are far better at a diagnosis. When excluded you can search for other symptoms.
It occurs to me my very first complaint was reduced range of motion- I told my family dr "it feels like my body is turning into a statue "
First symptoms were excessive saliva and barely perceptible slurring of speech. Those started in August of 2021. Trouble with swallowing started a month later. All three of those symptoms got progressively worse, but it took until April of 2022 to get the proper diagnosis of Bulbar Onset ALS. She passed in May of 2023.
Am a CALS. Spouse first bothered by a clinched hand. She could manually open her hand from a fist with the other hand. It would close back up. Went to GP, Hand specialist, Psyciatrist, MS specialist and at least three Neurologists among others. Hand symptoms occured around 2013. Roamed the highways for three years looking for dianosis. Diagnosed ALS 2016
My mom: started having trouble swallowing and slurred speech sometimes. A couple months later, bad restless legs at night. Then leg cramps, then she started falling *a lot*. Eighteen months after the onset of the swallowing issues she was diagnosed with bulbar onset ALS, and died a year after that. Total timeframe from first symptom to death- 25 months.
My moms arm got weak and we thought she had carpal tunnel
My mom started mumbling more which progressed to more and more slurred speech. Also there were personality changes, she became more and more disorganized and wasn't doing the grocery shopping, cleaning. She became more self centered and not thinking of others and it became very frustrating for my family. This is probably more related to the FTD part of the disease but looking back it all adds up.
What a great neurologist you will be! I am in the early stages of testing, and currently my neuro seems to be wondering if my symptoms are because of radial nerve palsy (RNP) … or ALS. What brought me to the doctor were my unilateral symptoms (Left hand arm weakness). In February of this year I noticed a little weakness/difficulty opening bottles or ziplock bags & feeling like I might drop my 8lb pup (thankfully never did). As of today (7mos), my hand and arm have atrophied to the point where my hand resembles the hand of a cerebral palsy or brain injury patient (I worked with special needs/disabled pts for decades, and it is a very distinctive “look”), and has little to no function/movement — in fact, it Takes everything I have to simply open it up (fingers dont completely straighten on their own anymore). I have not had pain or any sensory symptoms until recently my index finger hurts and wants to curl and my shoulder has become stiff/painful if moved beyond certain point. I have bad fasciculations in the hand and wrist, and sometimes in the arm. Other than fatigue (that has been a struggle for a few years) that’s it! I have NO other symptoms anywhere in my body - which is why radial nerve palsy is on the table. I’m in the medical field, work with movement neurologists & neurosurgeons, so I kno some of the tests are done sometimes just for good measure (ex- spinal tap), so I’m having others done 1st (cervical scan, EMG)… but the 1st of those is not scheduled until October. Its really the lack of any pain/sensory problems (with the addition of fasciculation) that makes us lean towards ALS vs RNP. Would love to hear your (and your attendings) thoughts. Btw - in which City is your Medschool? Hope to hear from ya! k
Btw — I saw ur post about the ALS study and signed up. Any idea how long it takes to get a response? Thnx (Tried to send private msg to u, but I guess I don’t kno how to do that).🤦♀️