33 yo female (and neuroscientist) - could be ALS, could be cervical compression.

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SW2022

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Hey ALS forum,
I'm looking forward to meeting you guys.
I'm 33, and have had a load of strange symptoms over the past 2 years that I mainly brushed off.
Of course I mostly want you guys to say 'oh no way that's not ALS' and I'd appreciate your opinions.

My symptoms are:
Fasciculations, constantly, all over my body (incl. tongue) that started in one leg about 1 month ago.

My foot stopped working while I was driving and I couldn't push the pedal even though it felt fine. But this hasn't happened again...?

Random muscles keep tensing up by themselves for a few hours, especially in my forearms, legs and buttocks. I had a few weeks where a muscle at the base of my thumb was tensed up so much it really did hurt. Sometimes its uncomfortable, most of the time I don't notice until I try to use the muscle.

My left arm shakes if I pick up something like a jug of water but my right is fine.

My symptoms I don't connect to ALS but you guys might be able to help:
Pain in my legs (perhaps cramping? But constant pain for a few hours) and forearms.

Feeling my bicep muscles are half clenched so it's uncomfortable to move them.

Feeling I can't move my hands as well, as if they've gotten extremely cold and they're stiff.

What seemed like radiculopathy (numb finger and thumb) has been on and off for years (but this is easily explained by the narrowed nerve root passages in my cervical spine.

Tinnitus - not sure this is ALS
On and off throbbing headaches?
Dizziness - I don't think this is like ALS right?
Electric taste on tongue and like my tongue is 'fizzing'?
A couple of periods of numbness in my hip areas.

I found out I have 2 big herniated discs in my cervical spine too, and of course I'm holding onto hope it could be that, but also know it's more likely ALS according to the doctors.

I have my EMGs on Monday and Tuesday. Had MRI head already, so not MS.

The surgeons think my cervical compression isn't bad enough to cause these symptoms.

Right now, I just feel angry. I can see from my hospital notes that they suspected ALS, but didn't tell me so I spent 2 weeks panicking that nobody was bothering to treat the two herniated discs in my neck. They referred me to an ALS specialist who does EMG and I read the hyperreflexia in my notes, then it started to connect for me.

I am also mad about how long it takes to see anyone! 2m wait for EMG unless I pay out of pocket. It's nightmarishly difficult and I'm just at the start.

What is making me sad (apart from the obvious) is that I have a PhD in neuroscience and spent most of my adult life learning about neurodegenerative diseases, just not ALS. Now if I have ALS I can't even work on it because I'll progress too fast to make any meaningful progress! Working on things like this makes me feel better which is why I became a scientist in the first place.

If this is cervical compression (even though the chance is slim) I will be working on ALS. What a rubbish, terrifying disease! The only thing that's good about it is that you keep your mind. It made me feel better that people can still write books even while they live with ALS.

For now, I'm setting myself up by finding support and getting real with it. Last week was not fun and I think I'm in 'bargaining/denial/periodic grief' right now.
 
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Nikki J

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Your post was moved and your forum interest changed as I see no diagnosis made yet in your post

why emgs plural? It sounds like you will have some kind of an answer in 48-72 hours Please let us know
 

Clearwater AL

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SW, maybe expand on your education....

(and neuroscientist) ???


Someone with your Neuro education asking questions like this....

Tinnitus - not sure this is ALS
On and off throbbing headaches?
Dizziness - I don't think this is like ALS right?
Electric taste on tongue and like my tongue is 'fizzing'?
A couple of periods of numbness in my hip area.

Maybe correct my thoughts here.

Sorry, I'm confused why you are here? I'd think there'd be many you could
address your concern to. Dr. Bedlack at Duke would be rather alert to discuss
your case... somewhat equal to his level.
 
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lgelb

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I don't see any reason that "doctors" [unspecified] would be suspicious about ALS from what you have said. However, your account omits several important points about whether clinical exams have revealed objective weakness, vertigo, increased muscle tone, etc.

As a scientist, you would be aware that not all sx have significant etiologies, and of the prevalence of BFS, the tendency of pain and other self-perceived CNS issues to feed each other, etc.

But even if that dx proved out, there are several physician/scientists who have finished out their research while themselves PALS. Feel free to post deidentified EMG results.

Best,
Laurie
 
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johnny5

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I ended up with a Cervical Fusion from C3 to C7 for similar issues. Misdiagnosis. UMN signs were nearly absent in my case.

They could not figure out if the cervical stenosis was what was causing my symptoms, so I agreed to surgery hoping that I did not have ALS. I had 6 EMGs up to that point from 2015 to 2018 and all of them demonstrated denervation and reinnervation. Post fusion, and recovery, they confirmed ALS in Oct 2019. The second diagnosis came after a brain MRI showed corticospinal tract hyperintensities/damage.

This all needs to be between you and your neurologist at this point. The referral to the ALS specialist is just a first step. ALS diagnosis results from ruling OUT everything else. Is it possible? Yes. But to make sure that you do/do not have ALS, you need to go through the process. This is a good sounding board here, but the final say will come from your own doctors....

If your foot stopped working, then started again it would seem as if that were nerve compression. 2 disc issues in the cervical spine can do that. The good news is that ALS only affects motor neurons (you know this) and numbness is not typically associated with it. Get your NCV/EMG done for expert advice though.
 

SW2022

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Those were my thoughts exactly (initially I thought they were crazy as clearly I had some sort of spine compression going on even if not extreme). But then I started to think about it more and it is weird that after 12 years of neck pain and herniated discs, now in less than 3 months I've gone from feeling totally normal (if not just a bit weak which I assumed was lack of exercise) to having all these insane symptoms. And at the same time my radiculopathy has actually gotten less severe, and now my main symptoms body wide are the fasiculations, the leg pain and the cramping muscles that won't relax. E.g. my forearm muscles, thumb muscles and sides of feet have tensed up most days now for 3-8ish hours.

I think doing my head in thinking about it is stupid and I'll probably find out tomorrow. I did want to say Hi though here - mainly because I think it could help to stop a full on melt down if I get diagnosed tomorrow.

The neurologist at the hospital, my PCM and my neurosurgeon were the ones that suggested (not specifically ALS) some sort of motor neuron disease. My PCM did tell me sometimes it looks like ALS but it is something else. The neurologist sent me to an ALS specialist (that I can't see until March) but maybe all motor neuron disease doctors are specialised in ALS.

I had my (lower half) EMG today and know it isn't great because there was definitely spontaneous activity. The doctor isn't a neurologist and didn't tell me what it was. He didn't want to say anything but he did say 'but your amplitude looks pretty good'. My EMG was fine (according to technician), the NCS was not.
 

lgelb

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If the EMG was fine and the NCS was not, that definitely points to something other than ALS.
 

SW2022

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Ok so I got the first report from the lower half of body back. My nerve conduction is fine. The EMG showed 'large motor units' with increased amplitude. They didn't detect fasciculations but I'm definitely feeling them. There is no paraspinal involvement (so I guess that means it isn't my spine?). So it sounds like ALS? The doctor that was supposed to do my top half had left when I got there yesterday so I only have half the story now, and no neurologist. I am trying to research it to understand if there is anything else that could make that EMG.
 

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If you had ALS, I'm quite confident that the the neurologist would have let you in on that very important piece of news. The reason is, they would have offered you riluzole, discussed making sure your affairs were in order, and referred you to an ALS clinic.

Could you please post the EMG report, along with the summary, with all identifying information removed? No one can guess what happened with the test or what's in the report, until seeing the report firsthand.
 

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No that doesn’t sound like an ALS EMG if that was the only finding. I can’t tell you how many people have come here reporting that on emg and never come back diagnosed. It can happen from some healed/ healing injury, it can be seen with people who are muscular and sometimes it seems like no reason at all

ALS emgs show acute and chronic processes in widespread areas. yours did not. Paraspinals are very sensitive for limb onset ALS
 

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SW2022, just curious, you have good computer skills so as posted above the
Summary/Conclusion of your last EMG at the bottom would be helpful.

Sorry, I'm amiss you being a Neuroscientist with all you and we have covered
you don't have a clearer understanding of whatever... points away from ALS.
 

SW2022

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I'll paste the full bit the doctor wrote below:

Impression:
1) Normal NCS (nerve conduction study) of the bilateral upper extremities.
2) Nonspecific large motor units in lower extremity muscles tested without any active denervation
and without paraspinal involvement. In context with normal NCS motor amplitudes, this finding
is unclear. Patient is going to have upper extremity study tomorrow to further evaluate potential
pathology.
Clinical correlation is recommended along with appropriate imaging studies if indicated. If
symptoms persist, a repeat study can be performed at a later time.


My worry is this plus the fasiculations
 

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Truly, this is not what we see with ALS. Please return to your doctor as this can then all be explained to you in context with your actual situation as they have examined you.
I know you are worried, but your doctor is the only one that can help with that - trawling the internet and trying to engage people who have not examined you into figuring it out is not helping you at all, it is fuelling your fears.
Let us know when you get a diagnosis for sure, I hope it is solved soon.
 

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I’m a bit of a curious person being years ago I had to read messages
for code. I know a little more than I let onto here that’s why my
replies so often are different than as the others do… but with ALS we
are fortunate to have some extremely ALS knowledgeable members.

Being a Neuroscientist you have a Ph.D… sorry, no offense but have
you achieved you your Ph.D or are you still in study for it being
32?

Again, if so, you having a Ph.D with the resources I’d believe you
would have available – other doctors, associates which nearly none
who come here have is amiss for me (maybe just me) to grasp.

I truly hope your doctors find you the path to a healthy life because
32 is so young and there is so much life ahead of you and to
pursue your career.
 

SW2022

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I got my PhD (age 28! But that's quite normal - you've got to get your masters and first degree first). It doesn't seem like any doctors so far know about it (I've mainly seen neurosurgeons-the one today said it isn't his area, same as yesterday, and that my neck wouldn't cause this) and I'm looking at end of March right now for an appointment with a proper neurologist who specialises in this. It doesn't seem like diagnosing these things is a priority.

You can ask any scientist you want about ALS but they're going to know about neurodegeneration (which I already know about) and general parts of the disease. This is irrelavent to a patient unless you are looking for a druggable target. I know very little since mine was in Alzheimer's and frontotemporal dementia. People used to email me to ask me how to help their family members with things like MS - I had nothing to give them - my entire work was about understanding how the disease happens, not how to cope with it. They're not going to know about how diagnosis goes, how things actually feel. A doctor is going to tell me I have ALS, and that will be it. I can go read about symptom progression all I want, but what I'm actually feeling in my body is terrifying. This isn't 'weakness in hands and legs' - the constant fasciculations everywhere, feeling like I'm missing half a butt-cheek going uphill(!), not being able to walk on a straight line, the 'fizzing' feeling on my tongue, not being able to open my front door with my left hand like I've done every day for years. Nothing on the internet tells you how that feels or how to get to grips with it and figure out how to live in the best way possible.

Honestly, I'm scared. That's why I thought I will come here. And I also don't want to wait months for a doctor to tell me while I'm getting results. I want to feel in control of what is happening and how my mind reacts as much as possible. I want to be able to take in the diagnoses and be at peace with it.

How you're supposed to come to terms with it etc, if I do this work now, before I get the diagnosis, maybe I'll have a better chance of not wasting my time denying it.

Yes I hope it is something I haven't heard of yet. Or the EMG was a mistake, or it was a fluke and I lost some motor nerves and now it's going to stop. But I've got hyperreflexia, fasciculations mainly in the legs, wasting of thumb muscles, weak left hand and arm, weak right leg and my right foot is stopping working intermittently. It's happened so fast - 3-4 months ago I had no symptoms like this.

I don't know any ALS scientists. I did wonder though, maybe there hasn't been enough work on it because there isn't enough funding as it is so rare so the drug companies aren't focused on it. I'm in the same place as all the non-scientists here... minus the understanding that no stem cell therapies will help and of how degeneration happens.
 
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