Maybe ALS? Not sure, would love opinions thanks!

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Cjs

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Hello, and thank you for your precious time!

I’ll try to keep this short and clear as I can.

I’ll preface this with I am waiting for an EMG appt, and understand that would be definitive to some extent. I also have a connective tissue disorder called Ehlers Danlos Syndrome that causes weird things in my body, but the concerning symptoms are new.

Okay, here goes: I have had body-wide twitching for about a month. I’m not super ridiculously concerned about them because I think they’re common with EDS. I also started experiencing numbness, tingling, and what I felt like was weakness and clumsiness, but that didn’t show up as clinical weakness on a neuro check and OT/PT assessment, though some clumsiness was noted. The tingling spread to all 4 limbs and my face and tongue over the course of the month and worsens over the course of the day, but is constant.

I also had 4 weeks of severe shortness of breath that was relieved somewhat with lying down (which seems incongruent with what I know of ALS) that has mostly abated. I don’t have dysarthria, or any new dysphagia just the tingling and odd sensation that makes my mouth feel like it’s not working properly.

I ended up in the ER last night and they did a head and spine CT and. Brain and cervical spine MRI. My cervical spine is an absolute mess and will likely require surgery and fusion, and a potential Chiari malformation.

Writing this I can see that ALS is probably not the dx, since I know tingling isn’t common, but I saw two posts/comments that upped my anxiety tenfold, one about mouth/tongue tingling leading to bulbar onset and another where the gentleman had undergone cervical fusion thinking his symptoms were related to that to find out he had ALS after the fact.

I did read the READ BEFORE POSTING. I actually screenshot it to save on my phone for my most anxious moments. I just needed to ask for thoughts about the possibility of this being ALS.

Okay, so this ended up long, sorry! I should add I’m a 41 yo female and that I’m an SLP who is an AAC/swallowing/respiratory specialist trying to build an ALS program at my hospital, so learning about ALS is my life and happened to roughly coincide with the the start of the weird body symptoms. I feel like this has contributed to my fears, but I am too far in to stop, so there’s constant exposure to information.

Thank you again for taking the time to help me and my crazy brain. I truly appreciate it!

Also, I have cramping in my L arm and leg, and tremors in my hands. Gabapentin seems to help with this, and the tingling in general, but my leg and arm on the left still both feel off
 

Cjs

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I can totally see why my original post would have not gotten a response - why bother? That said, my symptoms are really starting to freak me out.

The tingling has spread through everywhere but my torso. Gabapentin helps, but my hands continue to feel clumsier and sort of spastic (muscle spasticity), and my leg on the same side feels like it’s constantly fighting foot drop. My attention is of course focused on it, despite my best efforts to not think about it. I guess I wonder if PALS feel the weakness before the failure? The other piece that concerns me is that my major compression in my c-spine is on the right, but my main clumsy/stiff/tingly symptoms appear on the left.

I was also reading about my spine stuff and entirely by accident (it was not in the title of the research article) I read the abstract of a paper that said issues in the spine where it meets the skull (which I have) can cause cascade effects that contribute to and are being investigated as causes of neuro degenerative diseases like ALS. I stopped reading immediately to minimize the freak out, but too late.

I am trying so hard to just chill and enjoy my time with my family, but having a body that seems to be going crazy is not helping, nor is being on a 17 hr road trip with my brain. I’m worried that while yes I do have known severe cervical spine issues that maybe I also have ALS. The thing that keeps sticking in my mind is that in December and into mid Jan I felt totally fine outside of ongoing neck issues, so if this is ALS it would be progressing very quickly. I’m sitting next to my 3 yr old just trying to keep my ish together, and if you could spare the time I would love so very much to just talk to someone. Thank you!
 

Nikki J

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Hi
I am sorry you didn’t get answered before. It was nicely organized but long and no clear questions

tingling is a sensory symptom not a motor one

the feeling weakness is addressed in the sticky and also frequently in the threads. I have NEVER felt weak. Right now my totally paralyzed muscles don’t feel weak. They just don’t respond when my brain tries to tell them to move. This has been true from the start

I am curious about that article and would appreciate a link. I can tell you that many things have been theorized to cause/ contribute to ALS but so far we really don’t know except for autosomal dominant genetic ALS
 

Cjs

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Nikki, thank you for answering! I see that about my first post looking back, sorry. Thank you also for answering my question about whether or not you actually felt the weakness prior to the failure, that is the thing that has been cycling through my brain nonstop. I read a number of threads, but then stopped myself because it was just making things in my brain worse. I also read a thread where someone did have tingling and was misdiagnosed as cervical spine disorder, then was diagnosed with ALS afterwards, so that sent me into a tailspin. Add my constant exposure to ALS information (which should maybe help, but doesn’t), and I can’t seem to shake the thought. Thank you again. I’ll try to keep your words in mind.

Here are the links to the articles I read suggesting possible causality/contribution of craniocervical compression disorders to ALS:


 

Nikki J

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Thank you for the links. The first piece is a review and theorizes CCJ issues as a possible causes in many disorders from ALS PD AD to migraine to schizophrenia. He relies on one old case report for the ALS link. One person had ccj issues and ALS. That is hardly compelling. Was there a mention of ALS in the second link? Skimming I did not see it. If this was considered a likely line of approach there would be people working on it. I have been reading about ALS research, attending conferences and talking to researchers for many years. No one has brought this up anywhere I have been

similarly I am sure there are people who felt tingling and got ALS. It does not necessarily follow it was a symptom as many people have multiple issues
 

lgelb

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Sorry, I missed your earlier post, and happy to hear that you are involved in integrating ALS services at your hospital.

My late husband had Marfan, a related CTD to EDS, as you know, and acquired ALS later (dx'd at 60). His C-spine wasn't in great shape either, but he did not have a Chiari malformation, nor tingling.

At any rate, I kept updated on the literature with any kind of link. There was one member here, who has since died, who had an unspecified CTD who later acquired ALS, but I corresponded with her and her CTD was nothing like my husband's.

Even before you factor CTDs in, C-spine dysfunction and ALS are both conditions of aging, so it's not a shock that some people are initially incompletely diagnosed. Besides the fact, as Nikki notes, that you don't present an ALS picture and are pretty young for an ALS dx, EDS is a, well, syndrome, and sensory issues cascade. Beyond that, it was very clear when my husband lost function that it went well beyond his long-noted muscle atrophy secondary to Marfan. I don't see anything in what you describe that "goes beyond" EDS and documented radiculopathy/myelopathy in this respect.

Bottom line -- I see no reason to suspect ALS, so would expect the EMG to be reassuring in that regard, but this is all a good thing if you get treatment for your spine issues, which could certainly relate to tingling/spasticity, a notion on which the EMG will shed more light.

As always, but particularly with a CTD, I would advise you to get a second opinion outside your current health system as regards any spinal procedure or surgery.

Best,
Laurie
 

Cjs

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Laurie,

Thank you so much for sharing your story. Having a poorly understood CTD isn’t something everyone can relate to, or understand the myriad ways in which they can manifest themselves over time. Your words have given me reassurance, and I hope that testing can confirm that. The neurosurgeon I am seeing is outside of my health system and is an EDS specialist, but I have a secondary consult scheduled before I pursue surgical intervention.

Thank you all again for your time, it is deeply appreciated!
 
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