10 Year Journey - Weakness Now Observed?

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brentonjb

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Learn about ALS
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Hi Everyone! I was hoping to get some perspective after a neuro appointment and testing earlier.

For clarification, I posted here about a decade ago. At that time, I had a really difficult time recovering from jaw surgery (underbite fix and tongue reduction), which also seemingly promoted a host of perceived weakness and sensory/neurological issues throughout my entire body. After a battery of tests, I was ultimately (or essentially) placed in a 'wait and see' pattern for the next five years. Eventually in 2017/2018, I was diagnosed with cramp fasciculation syndrome by a university specialist. The consensus was that while I had fasciculations observed in various EMGs, there was never both active and chronic denervation identified (irrc), nor did I display any clinical weakness during this period.

Fast forward to this year. After several years of various BFS/CFS flare ups, I developed near constant sensory issues (pain + buzzing + numbness) in my hand. Therefore, having moved too far from my prior university neuro, I found a new neuromuscular specialist in my area and made an appointment with them. From my perspective, I assumed that I had potentially developed carpel tunnel syndrome. Along with that, the frequency of my fasciculations increased dramatically, but I attributed that to stress/dealing with my hand pain.

Today was my appointment. The Neuro performed their clinical, and everything was normal (in the limbs), except for my tongue. Neuro flat out said "You have weakness in your tongue". Neuro stated this while creating resistance / pushing against my tongue with my mouth closed, which she stated was 'clinically weak'. Immediately, I became a little concerned. I made a point to mention my prior surgery, but the neuro seemingly was unmoved by that context.

After the clinical exam, the neuro offers to perform a same day EMG. (Note: the offer was due to appointment cancellations, as they had 1-2 EMGs scheduled after me that cancelled - so super fortunate on my part it seemed).

So the EMG is performed, and it's essentially normal, with the exception of fasciculations seen in the calf. Areas tested were one hand, same arm, neck, back and one leg. Neuro did not test tongue or 'bulbar region'. Afterwards, I asked for their thoughts and it basically went like this (paraphrasing):

Neuro: Test went well, everything was very quiet, and only noticed some rare fasciculations

Me: That's good, right?

Neuro: Yes, I'd still like to do some genetic testing. There's neuromuscular stuff that can cause tongue weakness or sensory issues

**some back and fourth about carpel tunnel and the nerve study - which came back normal**

Me: Are you also testing for MND, should I be worried about ALS at all still?

Neuro: Well, anyone can develop anything, so it's hard to ever say, but I wouldn't worry about it in this moment

Me: That doesn't make me feel much better

Neuro: Oh don't worry, if you had ALS, I would have told you or seen it when you walked in, and I don't think you do right now

In conclusion, while I can appreciate the neuro saying she doesn't feel I have MND (which I'm thankful for), her phrasing felt odd and a bit calculated, sort of suggesting 'not right now' or 'in this moment' twice. It just didn't feel like a firm answer, which is the opposite of what I experienced over the last decade if the topic of MND came up. The entire conversation left me feeling a bit confused. Finally, the tongue weakness comment/analysis surprised me, both because A). I haven't really had any slurring or choking on foods - maybe some hoarseness, but thought it was allergies/the cold....and B). While the neuro seemed concerned by it during the clinical exam, she didn't seemingly test for it during the needle portion. Therefore, I'm just looking for some perspective on the following 2 questions:

1. Would tongue/bulbar weakness show up on limb EMG study/findings?
2. Do you feel I'm over-thinking the conversation? I would imagine the statistical probability of me showing MND weakness after 10 years to be quite low?
 
Hiya- sorry you find yourself back here.

1) Yes it would show up if it were lower motor issues related to ALS causing the weakness.

2) I wouldn't think MND would be the current concern of your neuro, given what she says she's inquiring about and the EMG results not showing a pattern consistent with ALS. The length of time you've had problems also points away from MND. Your doctor's mention of genetic testing and your long term sensory issues (and your ME/CFS diagnosis) point to something else. It may not even be revealed with gene testing, as there are so many obscure/less common genetic conditions out there that cause weird issues.

Not a great place to be in, but I'm thinking ALS would not be what your neuro is concerned about at all.
 
1 the neck was presumably the sternocleidomastoid which is a common site for bulbar testing. it is the site the doctors at my clinic use. It isn’t necessary to emg the tongue directly

2 her phrasing is pretty common. She doesn’t want to be sued if in 50 years someone develops als after she says no. what you relate does not sound like she is at all concerned about ALS
 
Thanks for the prompt replies Nikki & Shiftkicker! They're greatly appreciated.

In regard to the neck muscle, that's really helpful feedback. From what I recall, the neuro inserted the needle into the back of my neck (I don't recall where specifically), but it was just one stick/place and left it in for quite some time.

Since the appointment, I've been confused why if she found tongue weakness during her clinical exam, she didn't 'test' the muscle specifically during the needle portion (i.e inserted it into the tongue itself), thinking it would that have proved/disproved if it's truly weakness, or weakness caused by MND. From my uneducated view, it felt like a missed opportunity, or something that I might seek a second opinion on?

In saying that, I found a few posts on the forum here of PALS who went on to develop bulbar onset, but had 'clean/normal' EMGs, so frankly I'm just really confused on where to go from here =/ ...but I guess I'll proceed with the genetic testing?
 
Sorry, just some other questions that came to mind.

Is clinical weakness subjective? Does it change, or is it ever misdiagnosed? I was curious if the specialist that observed it in my tongue earlier, it possible that if she performed a new clinical, could the result would be different? Might be a silly question, but I'm just really confused/scared about the nature of the finding. I know that I'm not a trained physician, but I candidly don't feel the weakness in my tongue =/
 
I'm wondering if you might be better off asking your neuro some of these questions. She provided the exam and knows your medical history in detail, so she'd be in the best position to discuss why she made the observations/drew the conclusions she did. Having a 10+ year plus history of fearing ALS specifically means you are taking meaning from statements she's made that are not necessarily what she meant.
 
Good luck with this. I don't think you can be reassured any further by us.
You are seeing a neuromuscular specialist - you need to ask all further questions of them. They have seen you, examined you, and performed tests on you. This means their answers are completely in context.
ALS has been cleared from everything I read here. ALS is only one of many things that can cause clinical weakness. It is the last thing we would expect.
Please don't go further here, it won't be helpful for you in any way.
 
I'm sorry that you are still not reassured. Even after 10 years of chewing on ALS, 48 messages here, and clean bulbar EMGs, it seems you can not shake this unfounded fear. Please, the best place for clarification questions is with the neuro.

Good luck.
 
Hey Bestfriends & all.

I just want to say that I appreciate your replies. For what it's worth, and if I'm being vulnerable for a moment, I think myself (and maybe others) come to communities like these because doctors or doctor's visits aren't perfect - especially when your digesting new or difficult information. Trust me when I say that in hindsight, there's a multitude of questions I wish I had asked during an appointment. However, I did not, and now I am facing the prospect of waiting several months for additional clarification or answers (I wish I could just pick up the phone and speak to a Neuro, but the US healthcare system and all). Therefore, input from others, who have had similar or shared experiences can potentially bring some comfort or peace of mind,

Perception wise, I know it may seem that I have been ruminating on ALS for years. Which, I imagine for the PALS / community can cause agitation or disdain, especially when you're intimately dealing with a terminal condition. This isn't lost on me, nor is the constant health anxiety posts you graciously reply to that are completely off base. However, having been told ALS could be a possibility for me a decade ago by a respected Neuro, which subsequently required a year of testing, being sent to a clinic, and then 'waiting periods', I guess it's been something that I've tangentially been conscious of since that time, but certainly done my best to move on from. Fast forward to now, and being told I have clinical weakness in my tongue by an ALS specialist, is logically going to resurrect a once fleeting concern.

Ultimately, I was just looking for a bit of perspective and perhaps answers to a few questions. I truly didn't mean to offend anyone, and apologies if it was taken that way.
 
Brenton no matter how much more you post here, questions, symptoms, anxiety... there
isn't anything more anyone here can add. Ten years, 48 messages puts this now entirely
in your Neuros office... no longer here.

To continue to scour through old threads here is really a waste of your time.

"I was just looking for a bit of perspective and perhaps answers to a few questions."

Over 10 years that has happened. Again, the ball is now in your Neuros court. Not here.

"(I wish I could just pick up the phone and speak to a Neuro, but the US healthcare system and all).

Call yours or a new one or ask your doctor... we can't help you with that either. Until then...

I hope someone will find a way to move you to let go of ALS.
 
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But that same ALS specialist found clinical weakness and then said you don't have ALS.
Being here is not good for you - it's not about annoying or offending us, it's about your mental health.
You can email your doctors at the least if there are actually questions that are important to be answered.

I truly wish you the best, but it's the end of how we can help.
 
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