ALS or something else?

[JALSJ]

It has been 2.5 months since symptoms started. Symptoms appeared in this order: Extreme fatigue, dizziness, heart palpitations, muscle weakness, muscle twitching, muscle tightness. Twitching started over a month ago. First in my left toe, making it move sideways, then my left calf, now it is all over (arms, legs, feet, abdomen, and face, once in my tongue). High ESR blood inflammation markers. Clean bill of health on all other blood work, very extensive. Ruled out Lyme disease. Clean bill of health from cardiologist including non stress test and echo. Clean bill of health from sleep study, both at home and overnight tests at the center, clean brain MRI, no clinical weakness during three recent neurological exams. Waiting on an EEG, EMG, and spinal MRI.

The anxiety of waiting is mental torture. The number of tests I have been make me afraid that all that is left is ALS.

I feel my weakness is real. I feel a vibration through my body. My face is numb/cheeks are numb. I haven't physically failed but I think I will soon not be able to do something.

Does this sound like ALS?

Has anyone else felt weakness, tightness and twitches and found out it wasn't ALS? If so, please share your story/diagnosis. I need to find the hope that it is something else.

 

[Nikki J]

I can’t tell you how many people have passed through here reporting tightness twitches and perceived weakness that didn’t have ALS. Incredibly common on this subforum.

This feeling that you are going to fail but have not? And no clinical weakness ? Also very common among those who are here but don’t have ALS. Let the doctors do their job. Stay off the internet

 

[lgelb]

When you only "think" your weakness is real, by definition, it's not. But your body is stressed by something (and remember, even anxiety can feed on itself), given dizziness, fatigue, palpitations, etc.

It is completely untrue that "all that is left is ALS," so you have no reason to think that.

A high sed rate suggests you may be fighting off an infection. At the risk of the obvious, you may have complications of asymptomatic Covid or another virus.

As Nikki says, your story is very common and fortunately does not end in ALS.

 

[JALSJ]

Here are my updated symptoms:

Twitching: primarily on my left side of my thigh, calf, foot, and toes. However it can happen at times anywhere, very frequent. It's been going on for a few months now. Twitches happen about every couple of minutes. There are less frequent twitches elsewhere such as my arms, right leg, abdomen, and cheeks

I also have a consistent cramp at the arch of my left foot. The foot cramps often. I have to walk on it for awhile to loosen it. I also have an ankle joint pain on that side which may or may not be related.

Weakness: I wake up everyday with more weakness. I started physical therapy and they noticed a delay or slowness on my left side vs my right side. We started off with simple band pulls and leg leaning exercises. I tired very easy.

My forearms on both sides also feel tight. When I rotate my arm it's more apparent especially around the inner sides of my elbows. This is persistent.

It is harder each day to do daily tasks. I mowed the lawn with a push mower the other day and my arms didn't have the strength to push it so I had to push using my abdomen and arms and just push it with my whole body.

I feel I need to put more effort into typing, steering a car, pressing a brake pedal, walking in general, combing or washing my hair. My shoulders just want to keep my arms down like I have weights on them. Infact as I type this on my cell phone, the phone feels heavier then ever.

When I stand, I have a tendency to lock my legs or lean on things. I don't remember this unconscious habit before.

Hands: it is difficult to use my hands and thumbs. They feel stiff occasionally. My thumb on my right hand especially where the joint hurts a bit. My grip appears to be ok.

Atrophy: my muscles look to be symmetric so if it is atrophy happening, it's even. What worries me is the weight loss I've had. I've lost 15 lbs in matter of 2 months. Can't explain why.

I know that most start with one limb that gets weak then progresses. At this time I can't id just one limb that is weak but its generalized body weakness.

I know the weakness I have is not considered clinical weakness. I can still walk on toes and heels, I can pass the clinical exam for weakness but what worries me is that it's progressing where it's obvious I'm having trouble doing things I used to do without an issue. I fear that this weakness is going to turn into clinical weakness. The cramping also is worrisome along with the persistent long term twitching.

I understand twitching can be caused by many things. I've been taking magnesium supplements with no change. Although my stress over this is high at this time, when this twitching started I was not in any emotional distress.

My EMG is on Monday and I am very scared that this is ALS as the symptoms progress on a daily basis. My previous tests have ruled out almost all other possibilities that correlates with my symptoms.

Has anyone experienced similar onset like this?

I should also note I'm 41.

I have no known COVID infection but my doctor did do an antibody test which came back positive. However it's still hard to say if I had it since those tests can show positives for people vaccinated which I am. I don't remember being sick in the last year or so.

The only other notable blood tests that came back high was slightly elevated Parathyroid hormone. Slightly low vitamin D. Doctor said he does not think it's related to my symptoms given they were not off that much.

Has anyone experienced similar onset like this?

 

[JALSJ]

Giving you an update, hoping for some advice.

I got an EMG done on lower and upper extremities. The doctor reported no fibs, no denerves. Although this is a relief, given the information that I found about the EMGs here. On the other hand some information I read conflicts saying EMGs can be performed too early depending on the situation and follow up EMG in 6 months can help. I did not twitch when the needle was in unfortunately maybe that would have uncovered more information. I pointed out my forearms are tight but he didn't test them. He said the muscles higher up and my hands should cover it.

Despite the good news on the EMG. I still have to worry that my symptoms correlate with early onset of ALS. Weakness, twitching and spasticity.

The muscle weakness I'm feeling seems to be progressive. I can't stand for long periods of time, my arms feel weak and tire quickly when doing simple tasks like eating or washing my hair. The twitching continues everywhere. My thumbs feel weaker. I now also get what feels like jolts through my jaw when sleeping or about to fall asleep. I guess you could call it a spasm. My forearms are very tight, it's apparent when I straighten my elbows out. Still have that cramp in the bottom of my left foot along with toes. The weight loss of 15 lbs in a matter of around 3 months. I have always been tall and skinny but it seems like my muscles are smaller then ever both sides.

The only part that somewhat points away from ALS is that some of my symptoms are symmetrical, which I understand is uncommon but is also possible in rare cases from what I read. I think my grip strength on my left hand seems less then the right, but that could just be because I'm right handed.

Waiting on the spine MRI next and an EEG test. Nero says if those are clean we may need a muscle biopsy. Frankly it might be time to get referred to a Nero muscular person, even though it's a long drive I've heard mass general is the place to go. I know avg diagnoses for ALS is a year from first symptoms. Yikes! Will they tell me to wait and see if something completely fails? That worries me especially since clinical trials exclude progressed PALS.

I understand nobody is here to diagnose but looking for advice. I've read many posts before putting this one in and it's apparent that many members are knowledgeable. I would really appreciate any and all help.

Given what I describe am I going down the right path?

Would like to think it's viral, a deficiency or even autoimmune but all of that has been ruled out with extensive blood work. I don't think the doctors missed anything from that standpoint. This included a bunch of antibody tests for connective tissue diseases and such.

I do wonder if the NFL blood test would be worth asking about. I haven't seen any posts related to that test here.

So many things have been ruled out, as the list gets shorter my worry increases. Fatigue has set in. Its really causing me distress which I know doesn't help my symptoms

Thank you for your time in reading this.

 

[ShiftKicker]

Hello-

A few things-

Believe your doctor. This is exactly what they're trained for. If you are unable to believe them and their years of medical school and specialty training, then what can we say here that would reassure you? Would seeing a neuromuscular specialist reassure you? Your current neuro has actually provided you a plan of action and seems to be communicative- have you posed your questions to them? If so, what did they say?

The type of damage that ALS causes can be seen in EMGs whether the muscle is actively twitching or not. Some people with ALS do not twitch, yet the EMG picks up the specific pattern that indicates an issue. EMGs can pick up issues before a person even knows a limb is affected.

It's pretty clear you are doing a lot of of your own research and reading in an effort to reassure yourself, but it is achieving the exact opposite it seems. I am wondering if you can speak with someone who can help you develop some more beneficial tools to counter your anxiety over your symptoms. You absolutely deserve support while you search with your doctors for answers, but seeking that from people who have exactly what you are most afraid of (when you don't actually show the hallmark signs of it, nor have the emg results to support that) is only increasing your fears.

 

[lgelb]

+1 everything ShiftKicker said. You can't rule out a past virus causing problems just by running labs, for example. Feeling that weakness is progressive isn't nearly the same, fortunately, as having progressive weakness that a doctor can track. And your assumption that "weakness, twitching, spasticity" are all things you have, let alone a combination that is bound to be ALS, is false on both counts.

As for weight loss, it isn't clear if you have weight to lose, if anxiety is affecting your diet and/or energy expenditure, etc.

The jaw twitches near/in sleep suggest that a sleep study could be a consideration.

Best,
Laurie

 

[JALSJ]

Thank you for your replies. I appreciate your thoughts on the symptoms and the trust in EMG and doctors.

I've would normally not question a doctor and trust in what they are telling me. My experience at this particular neurology

 

[JALSJ]

Some reason my last post got cut off...here is my complete post.

Thank you for your replies. I appreciate your thoughts on the symptoms and the trust in EMG and doctors.

I've would normally not question a doctor and trust in what they are telling me. My experience at this particular neurology office has been a bit rough and maybe that's where my trust started failing.

My first appointment with one of the main nero doctors got cancelled as I was driving there. They said the doctor had to leave for an emergency and instead set me up with a nurse practitioner in Nero a few days later.

The NP seemed to be very caring and asked me a bunch of questions about my symptoms. Performed a weakness test, checked reflexes, etc. Given the length of time I've had these symptoms and the extensive blood work I already had, he was the one who ordered a full battery of test. EMG, MRI brain and spine, EEG. He also mentioned neuromuscular disease and how he would set me up with an appointment to see the doctor I was originally suppose to see who happens to have a background in ALS.

I came back to meet with that doctor. Who seemed like the complete opposite of the NP in terms of caring. He came in asked why I'm back. I explained to him my concerns and how the NP recommended I come back given his background. He performed a short version of the weakness test that the NP gave me. Asked me about my pattern of twitching. He said I don't see signs of ALS and walked out rudely. The meeting was about 5 minutes total. Not reassuring in the least.

I'm going back to see the NP I originally met to provide him an update on my progressed weakness. I will try to give him concrete examples, arms can't push the mower, arms tires out when eating, washing or combing hair, can't stand for long, etc.

I'm not trying to rant about the care im getting I just wanted to give some context to why I question if I should be seeing a doctor that specializes in neuromuscular disease given my persistent symptoms.

Re: sleep study. I had one prior to the twitching and they didn't find any issues at that time.

Twitching for 3+ months straight has certainly caused some sleep problems for me now but the generalized weakness started before the twitching did.

I would really like to think the twitching is anxiety or stress but it's concerning to me that it started during a time that I don't recall being stressed or anxious.

I also don't ever recall ever having a twitch before this, even a random one. My understanding is that people with bfs experienced them at certain points in their lives, even as an adolescent at least a few twitches. This was not the case with me.

I really just question if my weakness will progress into failure. I've heard it's atypical for it to happen like that but I did find examples where it did. It's just hard to accept a wait and see thing.

It's just getting hard for me to do pretty much anything without taking a break and resuming. I'm really scared since the weakness and twitching match with symptoms of this horrible disease.

 

[JALSJ]

Hi all.

Things have developed unfortunately. I'm hoping for some further insight and advice.

It's coming up on 4 months since I noticed some weakness in my legs. It's very clear to me that weakness has progressed and I know that can be a horrible sign.

I can't walk up or down stairs without my legs shaking. Its always on the edge of giving out since they have trouble holding my weight. I no longer can go on walks, I'd have to sit down every 100 feet or so.

I tried to do a few lunges and failed pretty quickly. My thigh muscles just don't have power.

I have trouble getting up from a seated position and getting up from bed. I need something to grab and pull up on.

My cramps have gotten worse. Toes, leg arch, calfs and thighs on both sides. My elbow joint pretty much locks up with significant tightness all the time. Example..after holding a phone to my head for 20 mins then dropping my arm down, my elbow is super tight and painful like the muscle won't release. This happens on both sides.

the muscles on my face around my mouth, jawline and cheeks also seem to be tight and I often get twitching in those areas that are tight. I can still smile but it starting to look and feel off for sure. I don't know if my face muscles will start drooping soon.

Twitching continues mostly on legs, arms and as noted my face. My toes still sometimes move side to side on their own.

My arms are really like lead, I can still lift them above my head but it takes more effort then ever before. I have to use arm rests on chairs that I never needed to elevate or use before. Forget about lifting anything substantial weight wise. I've never been super strong but I could atleast lift the water cooler jug. Just can't do it now.

My pinch grip on the left side is weak and right is better but also doesn't feel normal. I have trouble ripping open plastic wrappers. I still find typing to be frustrating, I really have to push my fingers down on the keys with more effort then ever before. When I use a mouse my thumb will cramp up after an extended time.

It just seems like almost every muscle in my body is somehow affected..weak, tight, cramping and/or twitching.

I'm trying get into see a nero who is specialized in nero muscular disease at mass general but they are booked so far out, just waiting to secure an appointment.

My next local nero visit is at the end of next month where I will explain the progression of weakness and the cramps everywhere. I suspect another emg will be in my future.

I know this doesn't sound typical, usually starts in a distal limb that fails and then it moves on.

This started in my legs on both sides then arms on both sides, then distal hands and feet. At this time I don't have issues with speech or swallowing.

The cramping has really gotten more painful and widespread, it's really distressing.

Lastly and also really disturbing is that the muscle tone in my calfs and arms appear to be going down. There is much more flab there then I remember, I can feel the bones through that flab pretty easily now. The right calf now does show some 'valleys' in the muscle when I flex it. Not found on left calf.

I'm most concerned with my leg strength, I think they are weak enough where a fall may be in my future. I have to take my time when I walk now.

Now that I'm seeing more pronounced symptoms and what I think is pretty fast progression. Do you yall think this picture looks more like ALS now? Has anyone had a similar onset of symptoms like this? Would this be considered flair arms and legs?

I'm really worried about the fast progression where I'm weak everywhere in 4 months. PLS is out the window with how quick this is right?

I don't know if I will be able to continue working and may need an assistive walker or cane.

this has been a long road with testing and it's coming to be the end of that road. Clean blood, mri, 1 emg, and rheumatoid doctors doesn't think it's autoimmune. I really wish I could secure that appointment at mass general, I really want to see a nero who specialized in what I'm facing. What else could it be with this these specific combo of symptoms?

I appreciate your valued advice.

 

[lgelb]

You seem very set on the idea that you have ALS, despite a clean EMG and a history that does not align with it. Labs do not rule everything else (not clear if your sed rate is still high), and autoimmune disorders are not all there is. There are several excellent neuromuscular centers in the NE besides MGH and if your neuro had concerns, you would be scheduled at one of them.

If your impairments are progressing, the first port of call is your PCP while awaiting the next neuro appointment. We have already discussed postviral syndromes. Some centers specialize in these.

Not sure what else to say by way of advice, except (1) maybe a counseling visit could help you see how many conditions are still on the table that are NOT ALS, or (2) the answer to your last question is still thousands of things, truly., or (3) it is possible to scare yourself into feeling weak, and a counseling visit coupled with more interaction with your PCP or even a telehealth visit could help determine whether that is at all true in your case.

 

[JALSJ]

Thank you for your response.

My SED rate is slightly elevated but not enough to be a viral infection according to my pcp. The rheumatologist confirmed this.

I've talked to my pcp about what's going on providing updates as i progress, he's at a loss and is still pointing to my nero.

The progressive weakness, widespread cramping, and twitching just seems to align with what I'm reading.

I have talked to a counselor about this being 'all on my head'. She talked about how depressed people can't even get out of bed. I do really wish it was 'all in my head' but frankly my will to get up and go is still there, i want to feel strong and i want my previous life back. She wrote me a prescription for gabapentin which I've been taking and it hasn't made much of a difference.

Yes I'm scared about the symptoms for sure but I stopped questioning if the symptoms were real when the cramps came in strong and my wife agreed that my legs and arms feel less firm and flabby. Simple walks are real challenge, I wish it was a subjective thing but it's becoming apparent over time that it's not.

I do think when I meet with my local nero in a few weeks he will see that progression and perhaps can support me in getting an appointment with a nero muscular specialist at MGH sooner.

I know everyone is different but I'm just wondering if anyone's onset story is similar to this. 4 limbs progressively weak, severe cramping everywhere including distal within 4 months, twitching everywhere including my face. Seems so fast with progression.

 

[Bestfriends14]

ALS does not start in the way your symptoms are progressing. Period. What makes you not believe this when so many people have told you so? You really, really don't exhibit ALS at all. I can only say at this stage, it's up to you to believe this. That's right- it is your choice. You.do.not.have.ALS.

Believe it or not. I wish you well with the counseling. Please continue to go and continue with your GP.

Take good care.

 

[JALSJ]

Thank you for your reassuring responses.

I just got confirmation that I will be seeing a neuromuscular doctor at MGH at the end of next month.

I understand a clean emg is a great sign but to me the progressive weakness, twitching, cramping and muscle wasting match up too well to ALS. Isn't that all the symptoms of early onset?

I do agree the progression is atypical. Weakness started in both legs then moved to both arms. My left grip and pincher are weaker then right with thumb cramping on both sides.

I'm just curious if anyone recalls pals on here who had a similar onset. Or if anyone has read a case similar to mine where it was confirmed to be something else.

my symptoms just keep getting worse everyday, no ups or downs, this has pretty much derailed my life.

 

[Nikki J]

It sounds most atypical and there are a number of other conditions it could be. Who are you seeing at mgh? You are lucky to get an appointment so soon