breezy318
New member
- Joined
- Feb 27, 2025
- Messages
- 7
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- CA
Finally got the courage to post here after reading hundreds of posts. A lot of background here but I have some questions at the end if you have time to read through!
August 2024: After getting back from an international trip, I was having episodes of severe heart palpitations and bilateral ache in my legs. I was shaky and felt like I couldn't catch my breath. Went to the ER and they did a EKG and some blood work to check for blood clots (all clear). Sent me home with a 24 heart monitor that ended up being fine.
Early Sept 2024: I tripped and fell when taking out the trash. This really shook me up, as I haven't had a "face plant" like this since I was like a kid. This has been my only fall so far.
Sep 29 2024: I woke up in the morning with bilaterial aches in my calves and pins and needles in my feet and hands. Over the course of the week, I started having full body muscle pain / aches, extreme join pain (specifically in my wrists and ankles), a 24/7 feeling of being flushed and weakness / easily fatigued. My PCP ordered bloodwork (all of it was fine) and put in a referral for Neuro for the tingling / pins and needles sensations.
Early October 2024: I met with a neurologist in late October who cleared me via a clinical exam. She was pretty adamant my symptoms were more autoimmune in nature, but ordered a spine and lumbar MRI and a NCS to cover our bases.
End of October 2024: In the two weeks that I had to wait for my MRI and NCS tests, I started experiencing twitching. I’ve experienced minor twitching episodes after working out but never anything constant to my observation. It started in my calves and quickly spread to almost my whole body within 24 hours, including my tongue. Disclaimer: my Neuro appt sparked my curiosity on MND and I went into a rabbit hole reading this ALS Forum. It’s hard for me to know if the twitching came on after reading that twitching was a sign of MND or if it was just a crazy coincidence. The twitching has continued today.
Early November: Did my lumbar and spine MRI. My MRI found degenerative bone spurs without canal or foraminal stenosis in my C4-C5 and C6-C7 which my neuro said was normal aging and shouldn’t cause any symptoms. Lumbar was totally clean. NCS came back totally clean and my neuro refused my request for an EMG because my CK levels were normal at the time (40).
Throughout November 2024: My symptoms of what felt like full body weakness continued (super shaky when I walked, felt like I couldn't balance at all) to get worse. I had times where my lower back and chest burned / ached. But then a lot of my symptoms started to settle on my right leg and left arm specifically (these two spots also happen to be my twitching "hot spots"). I also started to have a mild calf pain (kind of like pull/ feeling of a precramp) that lasted a week and eventually went away. I had nights were I had to put ice packs all over my leg because I was in so much pain. PCP prescribed me Gabapentin which I had a bad reaction to unfortunately. At this point, I had lost roughly 6 lbs since the onset of symtoms a few weeks prior.
Early December: Was having a lot of issues getting my PCP to do more testing to get to the bottom of my pain and weakness, so I paid for a upper body MRI out of network. The only thing that really turned up was that I had very mild degenerative arthritis in my left shoulder.
End of December 2024: I got COVID the week before xmas and then I got the flu right after New Years (super fun). I felt so weak and exhausted from all my medical issues in the fall that I really was trying to kick off the New Year prioritizing with a new outlook on how to prioritize my health.
First week of Jan: I woke up in the morning and while making coffee, I leaned onto my right leg and it like it was going to give out. I tried leaning all my body weight on it and my whole leg started to burn and shake. I tested my left leg and had no issues bearing my weight. I then attempted to balance on my right foot and realized I could barely keep myself up.
Where I'm at now: Over the last several weeks, it's become clear that my weakness, pain and twitching is pretty concentrated to my left arm / hand and my right foot and calf.
Right calf issue: A few weeks ago, i went to rub the leg after a painful walk with my dog and noticed how small the muscles in my calf were when I flexed compared to my left leg. After further inspection, the atrophy was very evident (my husband and two family members have also observed). I have at least a 2.5 cm difference between my calves in some areas. I still struggle to balance on this leg, my quad and knee is working over time to keep me up and burns after minimal exertion. I feel like I can’t easily contract or engage the muscles in this calf the way I can with my left so all my efforts to do calf raises and other exercises to build this muscle up are not working. I haven’t had any big falls again but I do find myself naturally bracing things when I attempt to put more weight on that leg. I also can't get this calf to feel any post workout soreness like I can activate with my other leg. I worry that it's just dying? At rest, this leg will have a mild cramping sensation but I haven't experienced a full Charlie Horse type cramp. Although it not's noticeable to others, my gait has definitely changed as I feel like I have to shift my weight and it's causing my right hip and right SI join to pop when I walk.
Right foot: My right toes don’t ground themselves when I walk which forces me to dig them into the ground so I can keep my balance while walking. It just feels like they sort of splay out when my foot touches the ground instead of stiffening to propel me off, and I can feel the top of the pad of two toes skim the floor slightly. The tension of me having to manually force the toes into the ground has caused a lot of pain in my foot, specifically in my arch. I also can’t see / feel the toe tendons in my right foot anymore when I flex my foot but I can see them on my my left? I’m worried this may be the start of foot drop but it’s been like this for about 8 weeks now without any noticeable change. I can still move my toes around (curl them and flex).
Left arm: This whole arm feels weak and I'm worried that my putting more strain on it may have caused the degenerative arthritis found in my MRI. My left bicep is definitely weaker than my right and noticeably “floppier” and I does look like my shoulder is bonier/ more thinned out than my right arm . It feels like my forearm and shoulder take the brunt of impact when I try to lift things or work it out instead of my bicep engaging. I also get an extreme tight, painful pulling sensation that starts in my forearms and goes into the palm of my hands and into my fingers. The forearm pain is almost like after you a vaccine or you've gotten your blood drawn. I don't know if this is considered a cramp but I have to rub a tender spot on my forearm to get it to go away.
Left hand: Fingers are super stiff and every finger joint cracks when I move my hand in a claw like motion. I haven’t experienced any failure to open jars or button a shirt, but it does feel like my fingers are getting weaker and the overall hand just feels…clunky/ awkward? I've now started experiencing quite a bit of pain when I apply too much pressure with my fingers on something (like using a fork or typing). It hurts in my fingers and in my palms. I twitch quite frequently on the palms of this hand as well. The other night, I awoke to my three of my fingers moving on their own, which really freaked me out. I also have some perceived atrophy in this hand (can see my tendons a lot more).
Every bone in my body clicks now when I make the smallest moves which makes me worried that muscle wasting has begun. I sound like rice crispie treats when I move around!
I switched insurances this year and had to get all new doctors. My new PCP said she definitely wanted me to go back to neuro for a second opinion. I met with my new Neuro this week and he was super patient and let me rant for like 15 minutes about all my symptoms. He did the clinical exam and was more thorough than my last neurologist with the reflex testing which I appreciated. At the end of his clinical exam, he scoot his chair closer to me and confidently said “This is not ALS. There are very specific things I’m looking for and you have none of those.” All my reflexes were good (Negative Babinski, Hoffmans, 5/5 strength across the board, can walk on toes and heels, etc.)
He then said he would order an EMG of my problematic leg and arm and redo my NCS just to check our boxes.
I immediately felt relief and like I could cry. But then I realized he hadn’t actually observed my atrophied calf. I asked him to take a look and I laid down so he could observe them. He took a bit of time examining both legs and then said he could see some differences but the EMG would help confirm what was going on. That caused me to have MAJOR anxiety because I am so weak on this leg. I feel like he put the cart by before the horse by confidently saying that given he could only clear me of UMN signs but the EMG will be the defining factor for my other symptoms (leg atrophy, my perceived but very real weakness and twitching). Reading his clinical notes, I think he's not so concerned because of all the other weird symptoms I had on the onset of this (which could and probably are unrelated).
I have my EMG scheduled for March 19 and I just started an SSRI today to try and get myself through the next few weeks until then. I’m terrified and pretty convinced something bad will show on the EMG given all my other symptoms.
For additional reference: my latest CK levels are 141 (up from 40 in November which seems like a scary jump and may correlate with my newfound atrophy but is technically still in range) and my NFL is 0.84 (<1.87 reference).
If you’ve read my whole story this far, thank you for letting me air this out
would also love any thoughts on:
1.) Whether this 5 month progression without confirmed clinical failure or weakness yet seems extremely off? I read that ALS rarely starts in two limbs at once, but if it does, it's pretty rare for it to happen with a contralateral arm and leg like I'm experiencing. Would like to know if this type of presentation has been seen on this forum?
2.) Is it strange to have already experienced some level of atrophy before clinical level weakness / failure in that limb? Speaking mostly about the calf atrophy that my neuro acknowledged. I'm so scared that this leg is going to give out on me any minute!
3.) I recognize that NFL levels are not used in diagnostics (I got this test done out of network on my own). Should my results give me some piece of mind or are these pretty unreliable?
4.) Are there varying levels of cramps in ALS? I've read a lot about charlie horse cramps which I haven't experienced (I know the feeling of an induced toe cramp) but I do have really painful tightness / feelings like I'm about to charlie horse but don't quite reach the pinnacle of pain if that makes sense.
I have read the sticky and understand that ALS is about "failure not feeling" but I'm worried that I'm just getting closer and closer to failure (or that my EMG will just show that I have it) and the feelings / sensations I'm having are versions of cramps / spasms that others talk about.
Thank you in advance for your thoughts!
August 2024: After getting back from an international trip, I was having episodes of severe heart palpitations and bilateral ache in my legs. I was shaky and felt like I couldn't catch my breath. Went to the ER and they did a EKG and some blood work to check for blood clots (all clear). Sent me home with a 24 heart monitor that ended up being fine.
Early Sept 2024: I tripped and fell when taking out the trash. This really shook me up, as I haven't had a "face plant" like this since I was like a kid. This has been my only fall so far.
Sep 29 2024: I woke up in the morning with bilaterial aches in my calves and pins and needles in my feet and hands. Over the course of the week, I started having full body muscle pain / aches, extreme join pain (specifically in my wrists and ankles), a 24/7 feeling of being flushed and weakness / easily fatigued. My PCP ordered bloodwork (all of it was fine) and put in a referral for Neuro for the tingling / pins and needles sensations.
Early October 2024: I met with a neurologist in late October who cleared me via a clinical exam. She was pretty adamant my symptoms were more autoimmune in nature, but ordered a spine and lumbar MRI and a NCS to cover our bases.
End of October 2024: In the two weeks that I had to wait for my MRI and NCS tests, I started experiencing twitching. I’ve experienced minor twitching episodes after working out but never anything constant to my observation. It started in my calves and quickly spread to almost my whole body within 24 hours, including my tongue. Disclaimer: my Neuro appt sparked my curiosity on MND and I went into a rabbit hole reading this ALS Forum. It’s hard for me to know if the twitching came on after reading that twitching was a sign of MND or if it was just a crazy coincidence. The twitching has continued today.
Early November: Did my lumbar and spine MRI. My MRI found degenerative bone spurs without canal or foraminal stenosis in my C4-C5 and C6-C7 which my neuro said was normal aging and shouldn’t cause any symptoms. Lumbar was totally clean. NCS came back totally clean and my neuro refused my request for an EMG because my CK levels were normal at the time (40).
Throughout November 2024: My symptoms of what felt like full body weakness continued (super shaky when I walked, felt like I couldn't balance at all) to get worse. I had times where my lower back and chest burned / ached. But then a lot of my symptoms started to settle on my right leg and left arm specifically (these two spots also happen to be my twitching "hot spots"). I also started to have a mild calf pain (kind of like pull/ feeling of a precramp) that lasted a week and eventually went away. I had nights were I had to put ice packs all over my leg because I was in so much pain. PCP prescribed me Gabapentin which I had a bad reaction to unfortunately. At this point, I had lost roughly 6 lbs since the onset of symtoms a few weeks prior.
Early December: Was having a lot of issues getting my PCP to do more testing to get to the bottom of my pain and weakness, so I paid for a upper body MRI out of network. The only thing that really turned up was that I had very mild degenerative arthritis in my left shoulder.
End of December 2024: I got COVID the week before xmas and then I got the flu right after New Years (super fun). I felt so weak and exhausted from all my medical issues in the fall that I really was trying to kick off the New Year prioritizing with a new outlook on how to prioritize my health.
First week of Jan: I woke up in the morning and while making coffee, I leaned onto my right leg and it like it was going to give out. I tried leaning all my body weight on it and my whole leg started to burn and shake. I tested my left leg and had no issues bearing my weight. I then attempted to balance on my right foot and realized I could barely keep myself up.
Where I'm at now: Over the last several weeks, it's become clear that my weakness, pain and twitching is pretty concentrated to my left arm / hand and my right foot and calf.
Right calf issue: A few weeks ago, i went to rub the leg after a painful walk with my dog and noticed how small the muscles in my calf were when I flexed compared to my left leg. After further inspection, the atrophy was very evident (my husband and two family members have also observed). I have at least a 2.5 cm difference between my calves in some areas. I still struggle to balance on this leg, my quad and knee is working over time to keep me up and burns after minimal exertion. I feel like I can’t easily contract or engage the muscles in this calf the way I can with my left so all my efforts to do calf raises and other exercises to build this muscle up are not working. I haven’t had any big falls again but I do find myself naturally bracing things when I attempt to put more weight on that leg. I also can't get this calf to feel any post workout soreness like I can activate with my other leg. I worry that it's just dying? At rest, this leg will have a mild cramping sensation but I haven't experienced a full Charlie Horse type cramp. Although it not's noticeable to others, my gait has definitely changed as I feel like I have to shift my weight and it's causing my right hip and right SI join to pop when I walk.
Right foot: My right toes don’t ground themselves when I walk which forces me to dig them into the ground so I can keep my balance while walking. It just feels like they sort of splay out when my foot touches the ground instead of stiffening to propel me off, and I can feel the top of the pad of two toes skim the floor slightly. The tension of me having to manually force the toes into the ground has caused a lot of pain in my foot, specifically in my arch. I also can’t see / feel the toe tendons in my right foot anymore when I flex my foot but I can see them on my my left? I’m worried this may be the start of foot drop but it’s been like this for about 8 weeks now without any noticeable change. I can still move my toes around (curl them and flex).
Left arm: This whole arm feels weak and I'm worried that my putting more strain on it may have caused the degenerative arthritis found in my MRI. My left bicep is definitely weaker than my right and noticeably “floppier” and I does look like my shoulder is bonier/ more thinned out than my right arm . It feels like my forearm and shoulder take the brunt of impact when I try to lift things or work it out instead of my bicep engaging. I also get an extreme tight, painful pulling sensation that starts in my forearms and goes into the palm of my hands and into my fingers. The forearm pain is almost like after you a vaccine or you've gotten your blood drawn. I don't know if this is considered a cramp but I have to rub a tender spot on my forearm to get it to go away.
Left hand: Fingers are super stiff and every finger joint cracks when I move my hand in a claw like motion. I haven’t experienced any failure to open jars or button a shirt, but it does feel like my fingers are getting weaker and the overall hand just feels…clunky/ awkward? I've now started experiencing quite a bit of pain when I apply too much pressure with my fingers on something (like using a fork or typing). It hurts in my fingers and in my palms. I twitch quite frequently on the palms of this hand as well. The other night, I awoke to my three of my fingers moving on their own, which really freaked me out. I also have some perceived atrophy in this hand (can see my tendons a lot more).
Every bone in my body clicks now when I make the smallest moves which makes me worried that muscle wasting has begun. I sound like rice crispie treats when I move around!
I switched insurances this year and had to get all new doctors. My new PCP said she definitely wanted me to go back to neuro for a second opinion. I met with my new Neuro this week and he was super patient and let me rant for like 15 minutes about all my symptoms. He did the clinical exam and was more thorough than my last neurologist with the reflex testing which I appreciated. At the end of his clinical exam, he scoot his chair closer to me and confidently said “This is not ALS. There are very specific things I’m looking for and you have none of those.” All my reflexes were good (Negative Babinski, Hoffmans, 5/5 strength across the board, can walk on toes and heels, etc.)
He then said he would order an EMG of my problematic leg and arm and redo my NCS just to check our boxes.
I immediately felt relief and like I could cry. But then I realized he hadn’t actually observed my atrophied calf. I asked him to take a look and I laid down so he could observe them. He took a bit of time examining both legs and then said he could see some differences but the EMG would help confirm what was going on. That caused me to have MAJOR anxiety because I am so weak on this leg. I feel like he put the cart by before the horse by confidently saying that given he could only clear me of UMN signs but the EMG will be the defining factor for my other symptoms (leg atrophy, my perceived but very real weakness and twitching). Reading his clinical notes, I think he's not so concerned because of all the other weird symptoms I had on the onset of this (which could and probably are unrelated).
I have my EMG scheduled for March 19 and I just started an SSRI today to try and get myself through the next few weeks until then. I’m terrified and pretty convinced something bad will show on the EMG given all my other symptoms.
For additional reference: my latest CK levels are 141 (up from 40 in November which seems like a scary jump and may correlate with my newfound atrophy but is technically still in range) and my NFL is 0.84 (<1.87 reference).
If you’ve read my whole story this far, thank you for letting me air this out
would also love any thoughts on:1.) Whether this 5 month progression without confirmed clinical failure or weakness yet seems extremely off? I read that ALS rarely starts in two limbs at once, but if it does, it's pretty rare for it to happen with a contralateral arm and leg like I'm experiencing. Would like to know if this type of presentation has been seen on this forum?
2.) Is it strange to have already experienced some level of atrophy before clinical level weakness / failure in that limb? Speaking mostly about the calf atrophy that my neuro acknowledged. I'm so scared that this leg is going to give out on me any minute!
3.) I recognize that NFL levels are not used in diagnostics (I got this test done out of network on my own). Should my results give me some piece of mind or are these pretty unreliable?
4.) Are there varying levels of cramps in ALS? I've read a lot about charlie horse cramps which I haven't experienced (I know the feeling of an induced toe cramp) but I do have really painful tightness / feelings like I'm about to charlie horse but don't quite reach the pinnacle of pain if that makes sense.
I have read the sticky and understand that ALS is about "failure not feeling" but I'm worried that I'm just getting closer and closer to failure (or that my EMG will just show that I have it) and the feelings / sensations I'm having are versions of cramps / spasms that others talk about.
Thank you in advance for your thoughts!
