u/The_Short_Goodbye

I noticed a few months ago that my right calf was slightly smaller in circumference than my left one. It is about 1cm smaller or so.

The difference has not changed since I noticed it and I had an EMG a few weeks ago in that exact calf/leg that came back normal. Also a recent spine MRI that was normal.

My right leg with the smaller calf has a slightly crooked knee that makes my foot kind of go outward when I walk. Maybe that could have caused some muscle imbalance explaining this?

My rheumatologist says because we just EMG’d the calf and my MRI was normal, that it probably was always that way and I never noticed it before freaking out about ALS. She said the actual muscle looks healthy and full in and of itself despite being a bit smaller. She didn’t feel it looked atrophied.

Anybody else have unexplained calf difference? I’m trying not to freak out but I am lol.

I thought my twitching had somewhat diminished (although still in the hundreds a day) but suddenly today for absolutely no reason I’m having a twitch somewhere every 20 seconds with hotspots in my elbow and ankle recurring frequently.

Did this ever happen to anyone? Like you think it’s less intense and then it explodes again??

I’m wondering if myositis could explain my issues. I already have an autoimmune disease (AS). Randomly in March, at 40 years old, I developed Raynaud’s in my right foot. I knew that could be a sign of something autoimmune coming soon, but I had no symptoms so my rheumatologist did nothing… 🙄

Then a month ago, I started getting frequent sore legs out of nowhere for 7-10 days, which progressed to bilateral muscle weakness in both thighs, and I can also feel pain and stiffness in my calves (I know it’s not a common myositis spot but I’ve seen patients mentioning their calves too).

Basically my symptom is feeling like my legs will crumble. I don’t like walking anymore because they feel unreliable. I mainly feel the weakness in my thighs, but like I said my calves can also feel pretty sore. Maybe they are compensating? My thighs never really feel sore per se. I also get a weird vibration feeling in my muscles that’s so hard to put into words…

I can still walk on my toes and walk up stairs and all that, but my muscles get terribly sore from just a normal day of moving around, and often times when I’m at rest my muscles will feel like they’re burning almost, almost as if I had a big day of working out even though I didn’t do shit. I also feel like my legs are kind of shaky going down stairs.

I freaked out over ALS at first and went to see a neuromuscular neurologist and had an EMG that was normal. She ruled out ALS, told me it wouldn’t start in both legs symmetrically anyway, and said she didn’t find evidence of myopathy either… She tried to tell me I had Functional Neurological Disorder but I don’t buy that. Not with the Raynaud’s clearly indicating something going on.

I have yet to do a CK blood test but my urine has not been dark. I probably don’t have rhabdo but I feel like it could be polymyositis?

Did some of you had a normal EMG and later were diagnosed via biopsy or blood test?

Thank you for your input! And sorry for the long text. 🤦‍♂️

I know everyone here thinks I’m crazy and I’m exaggerating my symptoms but I still think I can ask this question if some of you want to respond.

As some know I had an EMG last week that was normal and an ALS specialist cleared me of ALS.

The problem is: the EMG was done 3 weeks into my symptom of perceived weakness. I see so many people here say you need to do an EMG at 3 months or 6 months or whatever to make sure.

The ALS specialist disagreed and flat out told me "If you felt weak from ALS, that would mean enough motor neurons are destroyed for you to actually feel it. That would be impossible to reach a stage of feeling weakness and impairment from ALS and still have a perfectly clean EMG. You don’t have ALS."

Obviously I really really really want to trust this but I’m reading so much conflicting info on this topic. Unless I start falling down I don’t think I’ll be able to get another EMG with this specialist again.

Is my EMG reliable even if done early or have I just wasted my time?

Thank you!

Hello everyone,

I know I post a lot and I am sorry about that. I truly believe something is wrong with my body that just can’t be caught at this time and I’d like to pick your brain.

**Any reassurance, personal anecdote, anything really will be much, much appreciated.**

I posted the following info as a reply to a kind person helping me accept FND and I will copy it here so everyone reading can get all the information:

As of right now, both my legs feel weak, sometimes more at the thighs, sometimes more at the calves. I sometimes have visible shaking going down the stairs. Muscles feel tight, restless. Plenty of fasciculations. At rest, my legs will often feel sore and burning.

And now my right arm is getting more fasciculations, feels heavier, clumsier… How can this all happen so fast?

**ONSET:**

My onset has been weird. I admit it did follow a traumatic period of extreme health anxiety, but I have never experienced physical symptoms like that from anxiety in the past. It started as soreness like you get from working out too hard and in a quick 7-10 days it turned into this weakness, with one night going to bed mostly fine and the next day waking up feeling terrible. Weakness is perceived so far, but my legs can get visible wobbly going down stairs. It hasn’t really progressed since the day it just worsened overnight, but it hasn’t gotten better either.

**Some key points**:

\- Clear EMG in 2019; twitches and other symptoms went away for years after that
\- Clear EMG last week after about 3-4 weeks of symptoms; done by ALS specialist
\- Only three muscles were tested: calf, shin and thigh; neuro deemed that sufficient for a leg as symptoms are bilateral and same on both sides
\- Clinical noted bilateral brisk reflexes of the knees, unchanged from 2019; neurologist said it’s normal for me and not significant; otherwise normal exam with no Babinski, spasticity, clonus or clinical weakness

**ALS specialist opinion after EMG and clinical:**

\- Neuro told me EMG cannot be done too early in the context of presenting with bilateral subjective weakness and fasciculations in multiple muscles of both legs; said it would be an aggressive onset that would be picked up easily on EMG
\- Neuro also said bilateral, symmetric multi-muscle onset in thighs and calves would be an extremely atypical ALS presentation; to the point she’s personally never seen that

\- Neurologist has repeatedly emphasized that ALS was ruled out during the appointment; she looked me in the eyes 2-3 times and said "You do NOT have ALS!"
\- FND was her diagnosis; she theorized that it stemmed from some sort of trauma/psychosomatic process caused by relentlessness health anxiety that went on for months; says I am obsessed with getting a neurological disease and am manifesting symptoms, but in a fashion that doesn’t make sense with any specific disease
\- Strangely dismissed the fasciculations as "the same benign fasciculations you’ve had since 2019, made more frequent by your state of hyper-aroused nervous system

\- Ultimately proposed I start with therapy and told me studies show that people who refuse to believe they have FND never see their symptoms resolve, while those who accept it have great success…

But here I am, stuck with very distressing symptoms, almost waiting for clinical weakness to happen, sacred of my mind in a body that feels like it’s breaking down.

Sorry for the long message but I wanted to make it as detailed as possible.

Should I keep pushing for tests? Accept my FND diagnosis? How do I move on when symptoms are scary and ongoing? Leg weakness is visible as I sometimes tremble with exertion…

Hello everyone,

I know I post a lot and I am sorry about that. I truly believe something is wrong with my body that just can’t be caught at this time and I’d like to pick your brain.

Any reassurance, personal anecdote, anything really will be much, much appreciated.

I posted the following info as a reply to a kind person helping me accept FND and I will copy it here so everyone reading can get all the information:

As of right now, both my legs feel weak, sometimes more at the thighs, sometimes more at the calves. I sometimes have visible shaking going down the stairs. Muscles feel tight, restless. Plenty of fasciculations. At rest, my legs will often feel sore and burning.

And now my right arm is getting more fasciculations, feels heavier, clumsier… How can this all happen so fast?

ONSET:

My onset has been weird. I admit it did follow a traumatic period of extreme health anxiety, but I have never experienced physical symptoms like that from anxiety in the past. It started as soreness like you get from working out too hard and in a quick 7-10 days it turned into this weakness, with one night going to bed mostly fine and the next day waking up feeling terrible. Weakness is perceived so far, but my legs can get visible wobbly going down stairs. It hasn’t really progressed since the day it just worsened overnight, but it hasn’t gotten better either.

Some key points:

- Clear EMG in 2019; twitches and other symptoms went away for years after that
- Clear EMG last week after about 3-4 weeks of symptoms; done by ALS specialist
- Only three muscles were tested: calf, shin and thigh; neuro deemed that sufficient for a leg as symptoms are bilateral and same on both sides
- Clinical noted bilateral brisk reflexes of the knees, unchanged from 2019; neurologist said it’s normal for me and not significant; otherwise normal exam with no Babinski, spasticity, clonus or clinical weakness

ALS specialist opinion after EMG and clinical:

- Neuro told me EMG cannot be done too early in the context of presenting with bilateral subjective weakness and fasciculations in multiple muscles of both legs; said it would be an aggressive onset that would be picked up easily on EMG
- Neuro also said bilateral, symmetric multi-muscle onset in thighs and calves would be an extremely atypical ALS presentation; to the point she’s personally never seen that

- Neurologist has repeatedly emphasized that ALS was ruled out during the appointment; she looked me in the eyes 2-3 times and said "You do NOT have ALS!"
- FND was her diagnosis; she theorized that it stemmed from some sort of trauma/psychosomatic process caused by relentlessness health anxiety that went on for months; says I am obsessed with getting a neurological disease and am manifesting symptoms, but in a fashion that doesn’t make sense with any specific disease
- Strangely dismissed the fasciculations as "the same benign fasciculations you’ve had since 2019, made more frequent by your state of hyper-aroused nervous system

- Ultimately proposed I start with therapy and told me studies show that people who refuse to believe they have FND never see their symptoms resolve, while those who accept it have great success…

But here I am, stuck with very distressing symptoms, almost waiting for clinical weakness to happen, sacred of my mind in a body that feels like it’s breaking down.

Sorry for the long message but I wanted to make it as detailed as possible.

Should I keep pushing for tests? Accept my FND diagnosis? How do I move on when symptoms are scary and ongoing? Leg weakness is visible as I sometimes tremble with exertion…

Hello everyone,

For a month or so now I have been experiencing bilateral perceived weakness in both legs that seems widespread, meaning the thighs and calves feel weak, not a particular muscle. I also have widespread twitches that are more frequent in legs and right arm but can occur anywhere.

Previous diagnosis of BFS in 2019. Twitches had pretty much gone away for years before current event.

EMG done last week was normal. ALS specialist ruled out ALS with certainty and diagnosed FND/anxiety. Clinical exam showed no clinical weakness, spasticity, Babinski, etc.

All this is great but my legs remain super wobbly. Going down stairs they almost tremble. I can still walk on my heels and toes rather easily and going up stairs is not problematic, but walking, standing in place and going down stairs my legs feel super wobbly and weak. My right arm is also stating to feel shaky…

Could the ALS specialist have been wrong? She said she was 100% sure I didn’t have ALS but as the EMG was done only a month in or so, I am doubting the diagnosis and spiraling. It feels like the weakness is progressing and I’m very scared. Should I trust the specialist and test result? Is bilateral onset like this common in the big bad?

Hello everyone,

For a month or so now I have been experiencing bilateral perceived weakness in both legs that seems widespread, meaning the thighs and calves feel weak, not a particular muscle. I also have widespread twitches that are more frequent in legs and right arm but can occur anywhere.

Previous diagnosis of BFS in 2019. Twitches had pretty much gone away for years before current event.

EMG done last week was normal. ALS specialist ruled out ALS with certainty and diagnosed FND/anxiety. Clinical exam showed no clinical weakness, spasticity, Babinski, etc.

All this is great but my legs remain super wobbly. Going down stairs they almost tremble. I can still walk on my heels and toes rather easily and going up stairs is not problematic, but walking, standing in place and going down stairs my legs feel super wobbly and weak. My right arm is also stating to feel shaky…

Could the ALS specialist have been wrong? She said she was 100% sure I didn’t have ALS but as the EMG WS only a month in or so, I am doubting the diagnosis and spiraling. It feels like the weakness is progressing and I’m very scared. Should I trust the specialist and test result? Is bilateral onset like this common in the big bad?

I just got cleared of ALS after an EMG of my legs and a clinical exam by an ALS specialist.

She didn’t do my arms because I did not report any symptom there except very infrequent twitches. I was focused so much on my leg issues that I didn’t even think to ask her to do my arms out of precaution.

But of course, for 3 days now I’ve had a twitch in my elbow that comes and goes. Can be absent for hours then one pop every few minutes and goes away again, but it always comes back.

Is it possible for ALS to "hide" into the arms even if I don’t have symptoms there outside of the twitches that happen everywhere else on the body?

Did I mess up by not asking her to do at least one arm?

With this new elbow twitch I’m now panicking that the disease would have been discovered in my arm.

I just got cleared of ALS after an EMG of my legs and a clinical exam by an ALS specialist.

She didn’t do my arms because I did not report any symptom there except very infrequent twitches. I was focused so much on my leg issues that I didn’t even think to ask her to do my arms out of precaution.

But of course, for 3 days now I’ve had a twitch in my elbow that comes and goes. Can be absent for hours then one pop every few minutes and goes away again, but it always comes back.

Is it possible for ALS to "hide" into the arms even if I don’t have symptoms there outside of the twitches that happen everywhere else on the body?

Did I mess up by not asking her to do at least one arm?

With this new elbow twitch I’m now panicking that the disease would have been discovered in my arm.

OK so where do I start…

A few months ago, my mental health started to spiral dramatically from health anxiety. I became obsessed with various diseases, and my obsession was so intense that I couldn’t work and it dramatically impacted my family life. I thought of MS, as an example, constantly, and even clear MRI’s would not reassure me. The anxiety was relentless and overwhelming.

All that leading to three weeks ago. I woke up one day with tingling in my fingers that lasted all day, in hindsight I think it was a pinch nerve but I was just convinced MS was finally beginning and I flipped out. My psyche broke. I didn’t eat anything for two days, stayed in bed and just burned from the panic. After 48 hours, I managed to calm down and the tingling had subsided.

But I still felt like I easily got pins and needles and I was still internally panicking. A few days later, my legs started feeling sore, like I had done a workout. I was so anxious that I was eating very erratically, sometimes only one meal a day around 6PM, and drank only a few sips of liquid here and there. I figured that’s why my legs were hurting.

I kept this up for about a week, and one day I woke up with both my legs feeling weak. The thighs, the calves, the shins… just a profound feeling of weakness running through both my legs. When I stand up, it feels like my legs are jelly. But not like jelly legs from anxiety. A feeling of weakness like my nerves are dying and my muscles can’t keep up.

The thing is I could still do things like stand on toes and heels, going up stairs, etc. There was no objective weakness but the sensation of weakness was extremely distressing. And then, I started having muscle twitches everywhere. I was diagnosed in 2019 with Benign Fasciculation Syndrome, so I wasn’t new to twitching, but this just exploded.

So I fell down the ALS rabbit hole. Convinced myself I now had the disease, that the weakness was from ALS and so were the muscle twitching. Panicked reached a point where I didn’t want to be upright anymore and started spending like 22 hours a day on the couch if not more. I just got up to shower and have some food in the evening. I just thought Inwas going to die and the level of panic was impossible to put into words.

I was lucky enough to have a rapid appointment with an ALS specialist in a big research hospital. She also happens to be the founder of a FND clinic in that same hospital. She did a clinical examination, a nerve conduction study and a leg EMG. Everything came back normal. We had a 30 minute discussion, she asked questions, etc, and in the end she told me I had FND.

She said I had an extreme form of health anxiety over neurological diseases and that my set of circumstances made me reach a point where I am manifesting symptoms. She told me I needed to address the health anxiety in therapy and that the first step to healing was truly believing I had FND and not a neurological issue. She kept repeating "You do NOT have ALS, you have FND."

But now I struggle to move on. As my symptoms of weakness and twitches continue, I have trouble accepting the diagnosis and not thinking I have ALS that the specialist somehow missed. I have intrusive thoughts that my EMG was done too soon and that’s why it hasn’t picked up the nerve damage. The specialist told me I would do that. She told me if my weakness was early ALS, the EMG would have picked it up, but I read stories to the contrary… She also told me my symptoms of bilateral onset in all muscles of the legs did not even fit an ALS picture to begin with.

All this to say I am stuck in place, still fearful that the specialist is wrong and not accepting that my symptoms could be FND. My family is gaslighting me saying it’s anxiety and nothing more, like chilling will just make all of this go away.

I’m not sure what to do and how to move on and accept.

Hello all,

As some of you may know, I have had my second clear EMG two days ago. I was first cleared in 2019, but roughly three weeks ago I started having perceived weakness and burning and more twitching in both of my legs and I spiraled to the point of contemplating ending it all.

Yesterday I met with a top ALS specialist. You can see the details in my update thread from yesterday. She performed a clinical and EMG that both came back showing no evidence of any disease.

She said I had Functional Neurological Disorder and needed to treat my extremely severe health anxiety. She repeatedly told me I did not have ALS and that she was confident in her diagnosis. She said she was 100% certain I did not have it.

I asked if we did the EMG too soon and she said it’s almost impossible to do it too soon and if my weakness was from early ALS she absolutely would have picked it up on EMG. She says the EMG was textbook normal and she is ruling out ALS.

She told me the way FND works, I would never heal from my symptoms if I don’t accept in my mind that I don’t have the disease. She says the brain and the body need to feel safe. More importantly, she said my symptoms didn’t present the way actual ALS would, both in timeline, distribution, etc. Apparently that is typical of FND to have neurological symptoms that don’t make sense with how actual diseases work.

All this to say that while I felt 75% better after the test already, yesterday the reassurance started fading out. I keep thinking what if she’s wrong. What if the EMG was indeed done "too soon". What if I’m one of these cases people here talk about where EMG was clear early on.

I’m already feeling my symptoms getting worse and I’m going back in the hole and I would really appreciate some advice and reassurance so I can get it in my thick head that I don’t have this disease.

Thank you all so much. ❤️

Hello all,

As some of you may know, I have had my second clear EMG yesterday. I was first cleared in 2019, but roughly three weeks ago I started having perceived weakness and burning and more twitching in both of my legs and I spiraled to the point of contemplating ending it all.

Yesterday I met with a top ALS specialist. You can see the details in my update thread from yesterday. She performed a clinical and EMG that both came back showing no evidence of any disease.

She said I had Functional Neurological Disorder and needed to treat my extremely severe health anxiety. She repeatedly told me I did not have ALS and that she was confident in her diagnosis. She said she was 100% certain I did not have it.

I asked if we did the EMG too soon and she said it’s almost impossible to do it too soon and if my weakness was from early ALS she absolutely would have picked it up on EMG. She says the EMG was textbook normal and she is ruling out ALS.

She told me the way FND works, I would never heal from my symptoms if I don’t accept in my mind that I don’t have the disease. She says the brain and the body need to feel safe. More importantly, she said my symptoms didn’t present the way actual ALS would, both in timeline, distribution, etc. Apparently that is typical of FND to have neurological symptoms that don’t make sense with how actual diseases work.

All this to say that while I felt 75% better yesterday already, this morning the reassurance is fading out. I keep thinking what if she’s wrong. What if the EMG was indeed done "too soon". What if I’m one of these cases people here talk about where EMG was clear early on.

I’m already feeling my symptoms getting worse compared with yesterday and I feel like I’m going back in the hole and I would really appreciate some advice and reassurance so I can get it in my thick head that I don’t have this disease.

Thank you all so much. ❤️

I just got back from the appointment with a top ALS specialist.

EMG was crystal clear.

She said I had BFS and FND. I really pushed her with questions about EMG’s done too soon, etc.

She laughed and said to get off forums. That when patients come in with weakness, she sees EMG changes even in limbs that have no symptoms yet. She said to stop reading that nonsense. She agreed that yes, some people with only fasciculations can VERY RARELY present with weakness a few weeks later, but if your perceived weakness was actual ALS, the EMG would absolutely pick it up.

She repeatedly told me "You don’t have ALS, you have FND" and told me I can safely ignore my symptoms and that she would even bet her medical license on me not having ALS.

She said FND gives very REAL symptoms. It’s not in my head. She insisted on that many times. The brain really gives those symptoms but they are NOT from ALS. But they are as real as pathological symptoms would be. She compared it to an "somatic hallucination". She said "It’s like an extreme version of hearing about lice and suddenly feeling the need to scratch your hair" lol

I’m super happy but don’t know what to do. I’m still thinking what if she’s wrong? It’s a sickness. She was extremely confident in her diagnosis and she said to forget the twitches.

But my mind is racing like what if she’s missing something? How do you guys move on when symptoms are still there but everything is clear?

How can my legs feel so weak, yet I can still walk on my toes and heels easily and squat 10 times? Both my legs feel terrible. At rest, they start to burn, often around the shin and calf areas. Sometimes the ankle.

When I walk around a bit and do a few stretches, my legs will start twitching and vibrating as soon as I sit back down. Like an idle engine inside my body. It’s almost like they can’t handle anything anymore and the muscles are hyperexcited and panicking from any normal use…

… and yet, I can still walk up 15+ stairs without using my arms. But when walking normally, my muscles feel hollow, weak, like they will give out. There are crawling sensations, tightness, all kinds of weird stuff that makes me feel like I’ll crumble in 5 seconds.

Is this what pre-clinical weakness feels like? Am I just witnessing in real time the slow destruction of my motor neurons? In BOTH legs at the same time??

Anybody else have this shit? Is it my health anxiety and panic?

My EMG is tomorrow. Haven’t had one done since 2019 when I was diagnosed with "benign twitches/FND"… Not sure how benign it is anymore. My body is a popcorn bag and my legs both feel like I’m 80.

I’m sorry I’m posting again but I am spiraling and need reassurance and thoughts from the community.

Quick recap for those that never read my threads: got diagnosed BFS (with bilateral brisk reflexes) in 2019, twitching had stopped by 95% in the years since. Then over a few days I developed sore legs (thighs, calves, pretty much all over) that progressed to my legs feeling very weak and burning at rest, tight at the knees and calves, sometimes with a feeling similar to a toothache along the back of the legs and some restlessness. There’s also a kind of soreness even at rest. Twitching came back in full force bodywide but even more so in the legs and even more after using them. This started roughly 2 weeks ago.

This morning I looked at my right leg and in my calves and nearby muscle there was near constant twitching. Like one every few seconds on different spots. I couldn’t even feel them. So that means I twitch even more than I thought. I am panicking. Bodywide twitches have also increased.

I have an EMG in 2 days and I have trouble eating and sleeping. I have survived this in 2019 but at the time, I didn’t have this profound leg weakness and neuropathy feeling I’m having now.

I can’t stop thinking that with this weakness and this much twitching there’s no way I’ll have a clear EMG. I’m so scared and I just want to live for my two boys. I keep crying. My symptoms and twitching all point to ALS.

If anybody had any personal anecdote, facts or reassurance I need it badly. I’m completely losing my mind right now. ALS seems like the only possibility for my presentation.

I’m sorry I’m posting again but I am spiraling and need reassurance and thoughts from the community.

Quick recap for those that never read my threads: got diagnosed BFS (with bilateral brisk reflexes) in 2019, twitching had stopped by 95% in the years since. Then over a few days I developed sore legs (thighs, calves, pretty much all over) that progressed to my legs feeling very weak and burning at rest, tight at the knees and calves, sometimes with a feeling similar to a toothache along the back of the legs and some restlessness. There’s also a kind of soreness even at rest. Twitching came back in full force bodywide but even more so in the legs and even more after using them. This started roughly 2 weeks ago.

This morning I looked at my right leg and in my calves and nearby muscle there was near constant twitching. Like one every few seconds on different spots. I couldn’t even feel them. So that means I twitch even more than I thought. I am panicking. Bodywide twitches have also increased.

I have an EMG in 2 days and I have trouble eating and sleeping. I have survived this in 2019 but at the time, I didn’t have this profound leg weakness and neuropathy feeling I’m having now.

I can’t stop thinking that with this weakness and this much twitching there’s no way I’ll have a clear EMG. I’m so scared and I just want to live for my two boys. I keep crying. My symptoms and twitching all point to ALS.

If anybody had any personal anecdote, facts or reassurance I need it badly. I’m completely losing my mind right now. ALS seems like the only possibility for my presentation.

I have been searching the BFS and ALSorNOT sub for days and I never found a single post describing profound leg weakness and twitching like I have.

When I’m walking it’s like the back of my legs down to my shins gives off such a feeling of profound weakness of the nerves almost like a toothache in the legs (but not painful). My thighs and calves feel tight as hell and when I’m resting my legs they often start burning. Also anytime I use my legs and lie down the twitching goes haywire with some smaller popcorn type and some big single pops. I also have what feels like restless legs and anything that brushes on my feet or legs makes me jumpy.

I can walk on toes and heels easily and can do 10-15 squats (have not tried more) but it doesn’t change the fact that when using my legs they feel terrible like the muscles are so weak and aggravated.

I’ve had recent MRI’s so I know I don’t have any stenosis or something explaining that. I know ALS striking both legs simultaneously in multiple muscle groups is not a typical presentation but combining the problem in my legs with the twitching and hyper reflexes I just don’t see what else it could be outside of ALS.

In 2019 when I was diagnosed BFS after a clear EMG when I had fasics and brisk reflexes, I never thought I would actually develop the disease 7 years later. I should have known something wasn’t right.

I have tried so much to reassure myself but my legs feel like they’re literally dying and my twitching is bodywide but 75% in my legs especially after moving. I’ve tried stretching and it does zero. At this point I’m 100% sure my EMG in 3 days will show ALS and I’m just mentally checking out of life.

I literally haven’t seen anybody with these symptoms and only see people that have perceived weakness but can still bench press their house.

I’m a father of two boys of 3 and 6 and I’ve been crying for days alone at home while they’re on vacation with my wife. I just want this to end.

I have been searching the BFS and ALSorNOT sub for days and I never found a single post describing profound leg weakness and twitching like I have.

When I’m walking it’s like the back of my legs down to my shins gives off such a feeling of profound weakness of the nerves almost like a toothache in the legs (but not painful). My thighs and calves feel tight as hell and when I’m resting my legs they often start burning. Also anytime I use my legs and lie down the twitching goes haywire with some smaller popcorn type and some big single pops. I also have what feels like restless legs and anything that brushes on my feet or legs makes me jumpy.

I can walk on toes and heels easily and can do 10-15 squats (have not tried more) but it doesn’t change the fact that when using my legs they feel terrible like the muscles are so weak and aggravated.

I’ve had recent MRI’s so I know I don’t have any stenosis or something explaining that. I know ALS striking both legs simultaneously in multiple muscle groups is not a typical presentation but combining the problem in my legs with the twitching and hyper reflexes I just don’t see what else it could be outside of ALS.

In 2019 when I was diagnosed BFS after a clear EMG when I had fasics and brisk reflexes, I never thought I would actually develop the disease 7 years later. I should have known something wasn’t right.

I have tried so much to reassure myself but my legs feel like they’re literally dying and my twitching is bodywide but 75% in my legs especially after moving. I’ve tried stretching and it does zero. At this point I’m 100% sure my EMG in 3 days will show ALS and I’m just mentally checking out of life.

I literally haven’t seen anybody with these symptoms and only see people that have perceived weakness but can still bench press their house.

I’m a father of two boys of 3 and 6 and I’ve been crying for days alone at home while they’re on vacation with my wife. I just want this to end.