43 Year Old Woman, afraid I have ALS

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TippiLeigh

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Hello everyone. I’m a 43 year old mother of four. I’ve been experiencing increasing weakness over the last year or so. I kept joking that after I hit 40 everything went downhill. I’ve also had really bad GERD over the last decade, so I’ve been very focused on GI issues. (mostly nausea and getting full very fast.) I’ve lost a lot of weight, just in the last few months. I’m only 5‘ 2”, but I went from about 125lbs, to about 101lbs. I kept thinking the weight loss must be due to the GERD. But over the last couple of months, things have gotten worse and I’m having symptoms that don’t typically align with GI issues. Here’s where I currently am with symptoms. Some of this (weakness for example) have been present for quite a while, but there are some additional/new symptoms just over the last couple of months:

Weak legs, & tripping often
A couple of months ago I had what I thought was restless leg syndrome, but now realize they were twitching/jerking while I was sleeping
Leg twitching has increased. I do have it in both legs. It’s worse at night but the last few days I’m now seeing the twitching during the day
Difficulty jumping
Difficulty raising arms up high (it takes some effort and I can’t keep them up for more than a few seconds)
My left heel has become “numb”. I put that in quotes because I can feel sensation on my skin, but the inside feels numb, if that makes sense?
I’m noticing a bit of a foot drop on my left foot now. Very mild
Weak hands & dropping a lot of stuff (I don’t even feel things slipping, just boom! It’s on the floor)
Difficulty typing, buttoning, and overall loss of dexterity in my hands
When I look in the mirror my muscles look different. Thin, but also tight.
All my muscles are very tight, especially my legs. But even my hands feel like they just want to pull in. Same with my legs. Just want to curl them rather than straighten.
I’ve had some twitching deep in my abdomen. Like my stomach is getting pulled in. That’s only happened twice.
My tongue/mouth feel weird. It feels like pulling or involuntary movement in my mouth. Hard to explain. It’s actually gotten a tad better. Now it’s less involuntary movement, but now I’m having difficulty extending my tongue out of my mouth. I‘s like I have to concentrate and use effort to do it.
I have had a couple of weird throat episodes also. Not really choking, but almost like a short spasm in my throat. Even though I could breathe through it, it was very scary.

I think that’s the majority of my symptoms. So far my primary care physician has only ordered general labs (Which were all normal, including all electrolytes.) She’s going to send me for an MRI (still waiting for authorization) and I have an endoscopy and stomach emptying test scheduled. (Those were for the GI issues I was having.) She’s been fairly dismissive, but on Monday I’m going to ask for a referral to a neurologist. I want to chalk this all up to stress, but I don’t have new stressors in my life. I have a pretty good life actually. Which is why I’m so scared. I’m hoping that this turns out to be a very mild, curable disorder I have...but I also can’t help see how closely many of my symptoms line up with ALS. I would love any insight or experiences you can give. Thank you!
 

affected

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Hi Leigh,

that's a lot of symptoms all over, which really points away from ALS which is great news.
Have a really good read through here, it's pretty comprehensive.


For sure ask your doctor if a neurologist is worth seeing, but your doctor is likely following a path with testing.

Let us know how you go - doesn't sound like ALS, it's too widespread and general. You don't say your doctor has found actual clinical weakness, but you are reporting difficulty doing things.
 

TippiLeigh

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Unfortunately because of COVID, my doctor would only do telehealth appointments (via Zoom), so she wasn’t able to check my weakness. A couple of additional symptoms I forgot were tearing up all the time, at the drop of the hat, for some things that aren’t even really sad. And I’m super jumpy. If someone touches me or barely startles me, I jerk like crazy. It’s such a weird sensation. Hopefully I can get into a neurologist soon because my quality of life is gradually decreasing. I would really like to see what an EMG on me would look like. I’ve seen other comments where commenters told the poster to upload their EMG. If I’m able to get that done, would I upload it on this thread? Or is there a special thread just for that?
 

KarenNWendyn

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It really doesn’t sound at all like ALS. Feeling numb, taking extra effort doesn’t align with ALS. ALS typically starts in one area and spreads. For example it may be one finger. And things don’t take extra effort; one can either do them or not.

But you may have some systemic condition going on. Keep working with your doctor.
 

affected

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Did you read the link I sent you Leigh? You wouldn't believe how much time went into putting it together.

We are not saying nothing is wrong, we are simply saying it doesn't sound like ALS.
I hope you can live each day you have while you go through this process of finding what is going on because you will never get this time back, no matter what the diagnosis turns out to be.

Do let us know once your doctor comes to a diagnosis as it helps other people who worry.
 

TippiLeigh

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Thanks affected. I did read the link and I guess I’m not understanding your redirection to the link because I feel like I have quite a bit of the progression and symptoms listed there. I do have a lot of additional things going on, but I believe I have some overlapping/additional symptoms due to my long-term GI issues, so I’m sure that’s a bit confusing.

I definitely have a progressively worsening motor neuron issue happening. And based off of many of the stories I’ve read on here from actually diagnosed ALS patients, my progression and syptoms are extremely similar to what their experiences are. My husband is also a physician (not this speciality though, but did get his PhD from Cornell and MD from Harvard - super smarty pants) He agrees that its definitely motor neuron based off of symptoms he’s witness from me and based so far off of all other tests coming back negative, ruling out other possibilities, including other labs and imagining I’ve had recently. (Still waiting on brain MRI). As you all know, it’s such a long process to even get testing done, let alone a diagnosis. My symptoms have been progressing for about a year and a half.

I don’t think I was very clear in my original post about a timeline. These symptoms haven’t happened overnight. RE-reading it came off that way. I had more localized weakness in just my left leg/foot and that has spread to both legs and arms and it has just gotten to the point where I can’t keep ignoring the growing symptoms. Again, it’s been probably at least 18 months of this. It’s just over the last 3 to 4 months where I feel like my quality of life is being affected and additional areas of my body are becoming weak and now the fasciculations.

I’m honestly not trying to make my case for ALS. I seriously do not want it! Just felt like I needed to clarify a few things. I’ll be sure to update you all when I get a diagnosis (whatever it may be!).
 

affected

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Hi Leigh
I'm sorry, I don't think a doctor has confirmed you have a "progressively worsening motor neuron issue"? (except your husband who is not actually your doctor doing the workups and tests)
My husband was dead within 11 months, so this going on for some time doesn't make it ALS, in fact it points away. I guess the thing is - it ain't ALS til it is.

Let us know when you have a diagnosis, we can't add anything more here really and there are so many much more common things this could be before jumping to ALS.
All the best.
 

TippiLeigh

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[deleted as a personal attack -- mod note: this post was allowed to stand for some time as moderators debated erring on the side of allowing a different perspective, but was ultimately deleted because it falls outside our Terms of Service -- comments below by other members have not been edited as they also apply to similar situations]
 
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lgelb

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I agree there's no reason to think of ALS and that a systemic explanation is much more plausible. Since emotions are running high and you are in a diagnostic process, let's leave it here for now. Feel free to stop by with an update if/when you see a neurologist.

Best,
Laurie
 

Nikki J

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Have you been screened for celiac? It is an ALS mimc right down to emg


i don’t know what is wrong with you an emg will tell you much. Maybe it is an mnd but there are also muscle diseases, autoimmune diseases paraneoplastic syndromes and other things. I hope you get seen soon. Not knowing is hard
 

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I am dying from ALS and am currently dependent on others for all aspects of my care. I can also comment here as a retired rheumatologist, having spent over 25 years diagnosing and caring for people who often presented with systemic mystery illnesses.

You are coming to this forum asking for input on your symptoms. The people here who have commented are all experts, dealing with the disease itself or living through it with their loved ones, and having years of collective experience working with this forum. You’ve asked for our opinions and we’ve given them to you.

You clearly have something going on and it sounds like you’re in the process of being evaluated for it. Yes, the pandemic has slowed things down, but services are also opening up, and you will have your evaluation. In the meantime all we on this forum can do is give you our opinions that your presentation would not be typical for ALS for reasons we’ve mentioned.

It is terrifying when you have scary symptoms and no answers. I’m sorry you’re going through this.
 

Bestfriends14

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I am sorry you are going through all of this. With this stupid pandemic, getting answers to something unknown seems to be taking forever, which can be frustrating and scary. Having said that, I will chime in on what the other forum members have very kindly (and with support) said, your symptoms all over your body point away from the onset of ALS. I know you would like answers, but the only thing that can really be said is that ALS does not start the way you describe. I do not doubt you may have something going on, but what that something is, it is hard to say.

Please, when you get an answer, circle back and let us know. Best of luck and please stay safe.
 

TippiLeigh

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Symptoms didn’t start all over my body. They started with some general weakness in my left foot, which I no longer have use of and has now failed. They gradually have spread over months and months to what I described in my original post. Those were not overnight symptoms and they did not come on all at once. My body has been added failed body parts over the last few weeks and months. I’ve already been ruled out for EVERYTHING, except motor neuron diseases, including celiac and arthritis. I’m still waiting for a brain MRI and EMD.
 

TippiLeigh

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I feel like I didn’t do a good job of explaining the timeline of symptoms in my original post so I can see where all the dismissal came from. I apologize for getting emotional, but when you’ve have everything under the sun ruled out, yet your body continues to fail day after day, you get tired and scared and you post on the internet at 10 pm at night when you’re desperate and crying and a stranger just dismisses you. It didn’t feel good, but I also realize I had a very heated response.
 

Nikki J

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It’s clear that you have something going on. Could it be mnd? Yes but there are other possibilities including other neurologic diseases and without an emg and mri no one can say for sure one way or another. Hopefully you can see a neurologist and get the tests done soon.
 
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