Question about ALS symptoms, worried I have it

[StevenR97]

For the last 4 months or so I have noticed that the thenar muscles in my left hand have been getting smaller, along with weakness of my hand and arm when trying to use tools. At first I brushed it off as a normal difference because I'm right handed. The muscles also started to twitch and just get fatigued a lot quicker too. I feel like I struggle to move my left hand the way I want (also starting with my right the last few weeks, and I am noticing the same line that started the atrophy in my left hand a year ago), which scares me because something I love to do is play the piano and it has been getting harder.

I also get twitches everywhere, especially in my thenar muscles, calves, feet, and right shoulder. I do part time work on the weekends as an HVAC tech when not in school, and use my hands a lot there too. Recently, I also feel like my leg is getting symptoms too. My leg feel weak and shaky, and my calf seems a lot smaller than the other. If I try to climb a ladder at work or go up the steps it feels like it wants to buckle and give out. The last main symptom I have is that my throat feels weird all the time. It's hard to describe. It feels like swallowing is becoming a chore or I have to manually think about it. When I talk it feels like my neck muscles are straining to do so. I also feel like my jaw is shaky when I open it, like it doesn't feel "smooth" when opening my mouth, if that makes sense?

I talked to my dad who is also in the trades, and obviously carpal tunnel is super common in that line of work. I went to see my doctor, and he ordered an EMG/NCS of my left and right arm, which I had about a week ago, and it came back normal, which he said ruled out carpal tunnel, and he also said it made ALS unlikely (said he could not officially rule it out from only a two limb study). He also did strength testing and some reflex stuff which he said was normal too. Reading online, I also get that ALS is a motor neuron disease, and doesn't affect sensation. I do have mild discomfort in those muscles, which feels achy and uncomfortable, which gives me some peace of mind it isn't ALS, but it is still scary due to the atrophy. My issue is beyond carpal tunnel or ALS, I can't think of anything else that would cause wasting in my left hand, which can be seen by friends and family and not just me.

The EMG supposedly ruled out herniated discs, shoulder impingement, carpal tunnel, ALS, etc., but then what is causing weakness, discomfort, wasting, clumsy hands and leg, etc.? I am 26, and I understand this disease is rare, especially under the age of 30 or 40, but 26 isn't far from 30, and just because something is rare doesn't mean it isn't possible. I've been watching this forum for the past 2 months or so prior to making my account, and I have really bad anxiety for several years like a lot of people on this forum who are scared of ALS. My doctor gave me a referral to a neurologist, but I have not called and made the appointment yet, I plan to do it tomorrow.

I did read the long post about answers to common concerns, but did have a few more questions that may be a little repetitive, if so I'm sorry. My questions are listed below.

• Even with a normal EMG/NCS (no reinnervation/reinnervation, no fasciculations, everything was well within normal limits), is it possible to still have early ALS? I know the forum says it is not possible, but I have heard people diagnosed with ALS say otherwise (clean EMG then diagnosed months later)
  • I guess my concern is this, the only things I feel could cause both hands to atrophy is carpal tunnel or ALS, and the EMG supposedly rules out both
• If this is not ALS, do you have any ideas of what could be causing atrophy in my thenar muscles on both hands, weak hands and arms, weak and shaky leg and calf atrophy, and causing swallowing issues? I know I cannot get diagnosed or ask for medical advice online, but if it matches something else I don't know about I'd like theories from people that know more than me
• I understand limb vs bulbar onset for ALS, but I also know there is a mixed type as well, does this sound like mixed onset ALS?
• I hear people talk about clinical weakness vs perceived weakness online, even the forum guidelines says it is about failure, not about weakness, but doesn't weakness just proceed failure? If my arms and leg are getting weak, doesn't that mean eventually it will progress to full blown failure?
• If this is ALS (I get it's rare), at what point can I officially say "this is behind me, I don't have it, this is over?" Do i need a brain and spine MRI, and possibly a another EMG down the road?

My symptoms really scare me, and I feel like they could match ALS. Even if they don't, I still need to find out what is happening to my body to cause all these symptoms. Any advice from people who know more than me would be greatly appreciated. Thank you to all the brave people fighting this condition for sharing your stories, and thank you for all the care takers that do everything they can for their loved ones.

 

[lgelb]

You haven't seen a neurologist yet, and you're jumping to a number of conclusions. Your PCP is not a neuromuscular specialist.

1. Not from what you describe
2. CTS is NOT the only reason for bilateral hand atrophy, if you really have that
3. The most common answers to this could be postviral syndromes, lack of sleep, overuse injuries (even with a clean EMG), and nutritional deficits
4. No. There isn't really a mixed onset, either. Something comes first. But you left out a few variants like respiratory, flail arm, flail leg.
5. No. The first sign of clinical weakness is inability to do something, not feeling different
6. I could consider spine imaging if your neuro agrees, but not to rule out ALS, to rule out spine problems. I am very confident that you can put fears of ALS behind you.

 

[StevenR97]

Thank you for the response, sorry about the delay I was having issues logging back in. Just figured I would post an update. I called and scheduled my neurology appointment for mid-June. I am a little worried however because since my last post my symptoms feel like they are progressing rapidly (I say feel because I know it could just be anxiety/perceived worsening). A few days ago I tripped on the steps, which freaked me out about ALS, but realistically I think I just missed a step. I also feel my left hand and wrist have become worse. The biggest thing that concerns me is the fact that I have this fairly massive indent in my thenar muscles, and it seems to be getting larger as time passes. My left forearm has also developed some dents that looking back on old photos from even 2-3 months ago weren't there, and when I go to press up out of a chair my left arm shakes like crazy and feels so weak, similar things happens to my left leg like I described in the original post but it's worse now, and occasionally my left wrist just buckles on me. I just really am struggling with things like buttoning my shirt, typing, constantly dropping tools, playing piano etc., and it seems to be getting worse rapidly. The neck/swallowing symptoms have stayed the same for the most part but are still scary, although I know this is common with severe anxiety. I do have anxiety, and this has made it much worse, so I have also started seeking out a therapist to help me in that regard, but I still am really worried about the way my body is feeling right now.

My primary did some blood work since my last post and it all came back normal, including vitamin D and B12, along with lipids, metabolic, blood count etc.

I get my left and right arm EMG was normal in early May, along with normal reflexes, no clonus, normal strength assessment (only a few muscles tested) makes ALS seem like a bad fit. But I cannot get this feeling out of my head about how this is ALS and I don't want to ignore it only to be slapped with a diagnose in 6 months time. I still feel this is beyond just anxiety, and something is wrong with my body, but maybe it's all just perceived and in my head? I'm sorry of the reassurance nature of this post, I know this isn't the purpose of this forum, I just don't really have anyone else to ask about these concerns until I can see the doctor in June. I know being 26 makes it unlikely, but I am sure all of the people who eventually went on to get diagnosed all though the same thing early on. Any advice on both next steps and whether any of this information changes the "is this ALS" answer or not. Thank you to those who take the time to respond, and thank you for those suffering or caring for those suffering to share your experiences.

 

[ShiftKicker]

Hi there-

Sorry ALS is such a worry to you. You speak as though it's either ALS or all in your head which is an incorrect way to think. There can be a variety of issues that cause similar symptoms, and it would be between you and your doctors to figure things out. However, I will say, if you are focused on ALS only and relay all of your symptoms to them through the filter of worrying about ALS it can be an additional obstacle for your doctors to have to overcome to find causes for symptoms. Now that ALS has been eliminated via EMG and clinical exam, you must find ways to leave it behind.

Please read here: Read Before Posting to see just a partial list of conditions that share some symptom with ALS. I would also refer you back to lgelb's post to you about recommendations. I would also speak with your doctor about if they recommend physiotherapy to see if there might be a structural issue at play here too.

Take care

 

[Clearwater AL]

You know yourself this is common with severe anxiety. You do have Health Anxiety.
That’s an honest self diagnosis without a doctors confirmation as needed for all the others.

You got your left and right arm EMG’d. It was normal in early May… just a few weeks ago,
along with normal reflexes, no clonus, normal strength assessment.
For so many others it would be a great relief.

You know being only 26 makes it unlikely… even more so than you think.

I hope your Neuro doctor in June will assure you don’t have ALS. Until then... stop
reading about ALS, reading old threads here and try hard to find different things
to do until then. But... do seek any help possible for your Health Anxiety.

 

[StevenR97]

Shiftkicker,

I have been trying to tell myself it isn't ALS, and logically I get based on age and the EMG/NCS it's virtually impossible, but that fear is still there. I will try to work on the anxiety however. I still do have atrophy in that left hand and it's getting very hard to use, and every time I get up from a chair my left leg wobbles and shakes and everyone and a while buckles a little which is terrifying. Along with other symptoms, I just feel there is something wrong with my body even if it isn't ALS (but I know that is not the purpose of this forum, I will leave that to the neurologist). I will post back here after I see the neurologist just for the sake of completing the story, hopefully this is all anxiety. It really does mean a lot to me that you took the time to respond. With your own diagnosis you have much bigger concerns and yet you still chose to help me out, and I greatly appreciate it.

Clearwater AL,

I get that the clinical picture is clean, and I definitely do have health anxiety which I plan to start addressing soon (I have been looking for therapists). I do still have some pretty glaring symptoms that I am worried about, and feel there is something wrong with my body, but I get it most likely isn't ALS. I really do appreciate you taking the time to respond to my post. With your own diagnosis, you have much bigger concerns, and yet decided to help ease my fears. So a huge thanks from me, and thank you to everyone sharing their experiences with MND, of themselves or loved ones. If any good has come of my health anxiety, it is that after convincing myself of having various diseases and conditions, I have learned a lot about different struggles other people face. I really the strength and bravery those with MND have fight.

One last question I have is about volunteering opportunities. After the kindness I've been shown I would like to get involved in whatever small way I can. Any suggestions would be appreciated.

 

[StevenR97]

Hello again,

I am really sorry to bother everyone again, but I am a bit confused on something and had a legitimate question about an EMG/NCS test. So I read the section about common questions, and the bottom line is "Clean EMG = No ALS" and "Clean EMG & Normal exam = No MND". I am trying my best to accept the results of the test and not let my anxiety allow me to think I no better. However I am confused with some information online. Some ALS websites day EMG is the best test we have, but is not definitive and a clean EMG doesn't rule out ALS. Also, I know a lot of people in my dads and my line or work (sheet metal/HVAC) have had carpal tunnel but had several negative or clean EMG/NCS tests, and eventually a doctor made the diagnosis based on atrophy/function loss, despite a perfectly normal EMG/NCS. So my question is; how can one condition that affects nerves (CTS) have a clean EMG but still be present, but another condition that affects nerves (ALS/MND), have a clean EMG and rules out ALS?

If I am misunderstanding something feel free to correct me, I just am trying to gain more understanding. I have my appointment in a few weeks so I am just trying to go in more informed than I am currently. I'm just stressed because I just tried to cut the grass and was having trouble with my left foot and left hand which freaked me out really bad.

 

[Nikki J]

The diagnostic criteria for ALS include a diagnostic emg. If you don’t have an diagnostic emg anyone calling als without one is not adhering to the criteria. It is possible to have what is currently another MND with a normal emg but there would be significant exam findings. We see this primarily in pls which has florid upper motor neuron findings. Their umn disease can sometimes spread to lmn too at which point they would have developed ALS.