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Txemer

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Hi all, I'm a 33 yo female and have been fearing ALS for about 10 months now, since I started twitching all over my body. 8 months ago I had an EMG in my right arm and leg, came back normal. 6 months ago I felt like I was having difficulty speaking so I went to my neurologist and he cleared me of ALS based on a clinical exam, but would not do an EMG in my bulbar area. 3 months ago we did another EMG in my left leg, came back normal - as did my clinical - although he did not check my bulbar area. So for 6 months I've had difficulty with speech - although it really sort of comes and goes throughout the day - but in the last few weeks, I've woken myself up laughing once, feel like I'm drooling in my sleep more, and this morning I was eating crackers in bed and choked on one as it went down my throat before I had a chance to swallow. Just now I ate some peanut butter, and it's still stuck in my throat and I can't get it down. Does this sound like it could be bulbar onset ALS even though I was checked clinically for it 6 months ago? And had a clean leg EMG 3 months ago? Not sure why I'm having so many issues with my mouth and throat.
 

lgelb

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My suggestions, in no particular order, are:

Don't eat crackers in bed. In fact, don't eat anything in bed.
Get your PCP to check you for GERD/reflux and allergies. Consider trying a nasal steroid and/or bedroom humidifier (you live in a dry climate) just for fun.
Drink more water or juice, esp. while eating dry foods. Bring a water bottle when you go out.
Replace your furnace filter if needed.

Two clean EMGs and exams demonstrating no weakness argue against ALS, bulbar or otherwise. Lucky you! But of course, follow up with your PCP for strategies beyond the above.

Best,
Laurie
 

ShiftKicker

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Past thread here: https://www.alsforums.com/forum/do-i-have-als-als/42514-progression-symptoms.html

If you have symptoms that are concerning you or interfering with your daily activities, visit with a doctor. It's clear it's causing you some severe anxiety if you are returning to this forum after having been cleared of it and reassured by members here. You don't have need to visit an ALS forum, but it might be a good idea to speak to your doctor about looking into what is causing your symptoms and getting your health worries seen to.
 

Txemer

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Ok, thanks. I really appreciate y’all taking time to answer me. This has been a really scary ordeal and I just fear the doctors missed something. Y’all dont think this sounds like maybe just a slow progression?
 

lgelb

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I do not.

I would be hard-pressed to think of any PALS here who started with two clean exams and two clean EMGs.

You don't belong here, which is a great thing.
 

Txemer

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Well in full disclosure I’ve requested more like 7 clinical exams... both emgs were requested by me as well. I know it’s crazy... but the fear is there all the time. I just worry my left leg emg at the end of September missed the bulbar stuff bc he just tested a couple spots to humor me honestly. He actually Diagnosed me with BFS the very first time he saw me. And I haven’t seen him since that last emg so I worry this bulbar stuff actually cropped up since then.
 

Bestfriends14

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Have you been diagnosed with somatoform disorder by chance? I think it's best you move on and perhaps seek counselling. To think it's OK to have 7 clinical exams, multiple clean EMGs and still come to a forum for terminally ill people and their caregivers for emotional support and medical advice is quite telling.

You don't have ALS and I think deep down you know it. Why you've chosen to come to this site, I have no idea, but it's not healthy. Please move on and be grateful for your physical health. At this stage, I feel you need to follow a different diagnostic path such as counselling.

Best of luck to you in the future.
 

Txemer

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Well in full disclosure I’ve requested more like 7 clinical exams... both emgs were requested by me as well. I know it’s crazy... but the fear is there all the time. I just worry my left leg emg at the end of September missed the bulbar stuff bc he just tested a couple spots to humor me honestly. He actually Diagnosed me with BFS the very first time he saw me. And I haven’t seen him since that last emg so I worry this bulbar stuff actually cropped up since then.
 

Txemer

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I’m sorry. I don’t hinestly think it’s “ok” to disrespect or irritate. I’m just struggling with why I feel so bizarre all the time. I was diagnosed with nosophobia by one doctor - not my neuro. I’m really sorry. Truly I am. I’m not just trying to be an a$$. Just looking for some help. Going back to the neuro in two weeks to get checked and am hoping I will get possibly some reassurance that will last me. Again, I just worry the bulbar stuff has been missed.
 

lgelb

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Again, no, it wasn't. You report your symptoms started in your limbs if anything. But you had clean limb EMGs and exams, and no clinical weakness.

There can't be a second stage of ALS without a first.

And we are done here. Please see a counselor and get some help. That reassurance to hold you over the next two weeks needs to come from someone who can look you in the eye. It cannot come from us, clearly, since you are not accepting it.

And as for why you are feeling "so bizarre," everything you are telling us suggests that your mind is ruling your body in a big way right now. So to feel better, you are going to have to take a broom to your mind. That's where counseling and possibly medication comes in.

Best,
Laurie
 
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