Question about progression

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Elisetoile

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May 7, 2020
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Learn about ALS
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Columbus
Hi,

I asked a question about some symptoms I was having back in May. Unfortunately I’m still having some further worrisome things happening and not sure if I still need to be looking into this or if I need to go in another direction once and for all.

I have three little girls and I think a lot of my worry stems from this.

My history is widespread muscle twitching starting in March. I have had tired, fatigued jaws while eating sometimes and also some perceived speech changes with the letter “s” being awkward feeling at times, although those around me contend they hear no difference. As of a few days ago “sh” is also having a whistling sound at times and feels awkward to produce. I realize these are very subtle changes but they really concern me. The first change with the letter “s” I noticed in May. I have seen two neuros and had two clean clinical exams and had a clean EMG six weeks after twitching started but this did not include any bulbar muscles. I also realize that many with bulbar onset have clean EMG’s and the diagnosis is many times a clincial one. I guess my question is should I push for more testing or does the progression sound not likely to be something I need to worry about since it’s been three months since I first noticed the change, and explore other options like TMJ disorder or something like that. I appreciate any help you can give me.
 
Not sure where you got the idea that bulbar onset ALS often entails a clean EMG. The hallmark of ALS is certain abnormalities in all or most muscles tested, bulbar or otherwise. A normal EMG and two neuros' exams that don't show anything speak for themselves.

I'd follow up with your internist, who may want to explore sleep, nutrition, stress and mood changes (as well as the GERD and allergies highlighted in your last thread) -- but there is no reason to think of ALS, any more than there was in May.

Best,
Laurie
 
I so appreciate your reply. I think what I fear the most is some kind of sub clinical time period in which I notice subtle things happening before true weakness. Would all over twitching followed by bulbar weakness be a quite unusual presentation? I understand if you’ve lost your patience with me, I just can’t understand why I keep perceiving these changes.
 
Your key word is "perceiving", meaning only you see the "weakness", yet for clinical purposes, it isn't there. Please take Laurie's advice. What you are experiencing has nothing at all to do with ALS. Since you have had clean EMGs and clinical exams, let this, and the advice from the members here, assure you.

Good luck to you and stay safe.
 
Thank you for the advice. I do feel like something has changed with my speech. I’m not sure what exactly is going on but my neurologist has been kind to send me to a speech therapist for an evaluation tomorrow. Would a speech pathologist be able to detect early bulbar weakness? Would this categorically prove that any perception of speech difficulty is Psychosomatic on my part?
 
I'll just mention that even well before a speech pathologist will detect changes - all your friends would be asking you if you are day drinking because it will be so noticeable. Please believe us - you don't exhibit symptoms of ALS, work with your doctors, and good luck. Mention your huge fears and that you are asking terminally ill people to reassure you, that might really help your doctors work with you appropriately.
 
Thank you for your help. I have read several accounts on here with folks who have ALS starting speech problems with lisping and I feel like this is what is kind of happening to me. My “s” sound is different and feels different to produce and also now my “sh” and “ch” sound and feel different. Whatever is going on is subtle and possible slower than some have, but there is a progression. I supposed the only option at this point is to take it back to my dr and see if they can repeat the EMG. I have little hope left that this is something benign. I will update you if I receive any sort of diagnosis.
 
Please provide these links of people saying their ALS started with a lisp because, in anyone I have known with bulbar onset, they started with slurred speech. This was not something they initially noticed, but was pointed out to them by others.

I'm very sad that, with have small children, you are choosing to fixate and obsess over a disease you so overtly do not have. This has been shown by clean EMGs, clean clinical exams, and no ALS symptoms.

Perhaps speaking to a counsellor and getting them to explore a disorder called "nosophobia", you can get the help you need and be on the road to recovery.

Again, you have three small children; please spend your time hugging them and enjoying every minute you have with them. What a shameful waste of time it is to chase a terminal disease you don't have. Your time is better spent with the little ones because the time you have already spent focused on being ill, is time you will never get back.
 
Elise, it's pretty clear you have tapped out the resources of the people here. Folk have provided you with as much information, advice and reassurance as is possible and you are still struggling to be reassured re: ALS. No one is telling you nothing is wrong, only that ALS does not seem to be the issue. Remaining here and debating, researching and engaging simply can't take the place of actual in-person care from a doctor. It's important you work with the people who actually have real ability to help you- your doctors- as the folk here really are unable to provide anything that you are finding helpful.

Please let us know how your next appointment goes.
 
Elise the point I make is that everyone else will hear the changes and comment, asking if you are drunk. When someone is convinced they are talking differently but no one notices, it's an indication of something else.
Please don't focus on this, get back to a doctor and work this out.
 
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