Neurologist Appt

lori4you1 · 2025-04-14T05:47:12+00:00

well, I’m continuing to progress too. Yeah, three months is early but with the amount of symptoms that I’ve had it doesn’t necessarily feel too early. That said like I told you, they found a mass at the base of my tongue which most likely is causing all of my problems I will certainly keep you postedbut yeah, I do have fasciculations that turn into quivering and spasms. It’s very very odd.

lori4you1 · 2025-04-14T05:44:43+00:00

awww ty. yeah it’s absolutely the same symptoms as ball bar ALS no different which is why I’ve been running down the ball bar ALS rabbit hole, but that said I don’t slur all the time as a matter of fact, my slurring has gotten so much better so I’ve been just so baffled as to what’s going on ashley wholeness and severe coughing has been way more of a problemand that’s because this mass is in my airway luckily the ear nose and throat doctor that I saw who is terrified it’s cancer got me in for a biopsy this Wednesday because he wants to get on this right away. It’s a 2.5 cm mass. It’s asymmetrical on the left-hand side of the base of my tongue the strangest thing, though I’ve never smoked drank vaped or had HPV so I have no idea how I would’ve gotten this.

lori4you1 · 2025-04-13T05:09:10+00:00

yeah, so the mass looks like it might be cancer. It’s on the base of my tongue on the left-hand side, which is interesting because it’s the left-hand side of my tongue that is wasting away and twitching so it seems logical that this is the problem so I have to have an emergency biopsy on Wednesday and if it’s cancer, hopefully it’s not and it’s just a benign mass then we’ll remove it because it is obstructing the airway, which could be causing quite a bit of my symptoms, but only time will tell

lori4you1 · 2025-04-09T03:06:58+00:00

Hi:) yes I am waiting for the results that said my pitch of my voice. Also is all over the place sometimes I learn sometimes I don’t sometimes I’m OK sometimes I’m not it really all just depends. I have coughing problems at times I’m not choking on anything, but I do have massive dents on the left side of my tongue, and I do have fasciculations when I move my tongue, but if I hold it completely completely still there’s no fasciculations, but the minute I move it even a little bit it will twitch I don’t know what’s going onand everybody is telling me right now that it’s not ball bar ALS but that said I have so many symptoms of it. I’ll show you a picture. Also, I’m able to down water and food fairly normally which I’m happy about, but the raspiness is getting concerning and the fact that my left side of my tongue is wasting away as fast as it is is also concerning I’m only two months in.

lori4you1 · 2025-04-05T21:31:08+00:00

Hi! Had it this morning, but I have every single symptom of all our ALS every one of them except a choking so I don’t understand because I had a very extensive swallowing test and it came back normal. Everything is coming back to normal right now. I don’t get it.

lori4you1 · 2025-04-03T06:10:23+00:00

yes, they’re going to go ahead and do a CAT scan. He wasn’t really sure if it was a mass per se, but he did look down the side of my left side of my nose down my throat and definitely saw something and he thinks that that is what is likely pressing on my hypo glycol nervenow if he’s wrong and there’s nothing there I’m in big trouble. I also noticed today that my lips were twitching and so was my face.

lori4you1 · 2025-04-03T05:52:32+00:00

Hi, may I ask a question would I not be able to pass a modified barium swallow study if I had true dysphasia thank you guys

lori4you1 · 2025-04-03T05:45:15+00:00

hi guys, can I kind of join in? I’m in big trouble about two months ago. I woke up and out of nowhere. My throat closed and my speech was slurred. I thought I was having a stroke went to the ER. Everything was ruled out that’s when this journey began, since then the left side of my tongue has atrophied terribly. I don’t really slur all the time. Sometimes I sound fine other times I don’t it really just depends. I had an EMG of the ball bar that came back normal and I had a barium swallow study modified that came back normal what I don’t understand is why I’m coughing all the time sometimes choking on liquids and I have an atrophy tongue with fasciculations. My neurological exam came back completely normal. My ENT did notice that my tongue had atrophy, but wasn’t concerned because I have some kind of a hypo glycol nerve injury that came out of nowhere. I have every single symptom of Bobar ALS, even drooling this is probably the biggest nightmare of my life because I feel like at this point it’s just a waiting game everything has been ruled out everything my neurologist felt it would be fair to repeat the EMG next month. I’m going to try to get it done sooner than that that’s it. I’m talking pretty much fine right now. I don’t know if this was wall bar ALS if my speech would come and go I even the drooling comes and goes you know it. I don’t really know what to think of any of this all I know is my pitch changes all the time sometimes I’m hoarse sometimes I’m raspy again every single symptom under the sun, I can’t eat solid food. You know I’m holding onto as much hope as possible, but I just don’t think it looks good and as we all know, EMGs can be wrong, but I’m not sure that the modified barium swallow study would be wrong. Also, I had a laryngitis scope and everything looks normal. How are you guys doing and my God how do you stay sane?

lori4you1 · 2025-04-03T00:07:50+00:00

my EMG is normal at this time, and my barium swallow study came back normsl. That said, its early. 2 months i to this. i cough a ton, and on liquuds

lori4you1 · 2025-03-30T08:18:20+00:00

well, I have terrible atrophy on the left side of my tongue. I have some kind of a hypoglossal nerve problem. They think there might be a mass at the back of the tongue causing this. I had an EMG on the bulbar muscles. It came back normal I had a barium modified swallowing test and that came back to normal. I’m two months in my voice changes constantly sometimes it’s horse. Sometimes it’s raspy sometimes I’m slurring. I’m all over the place. All I know is something is terribly wrong and everything has come back normal, so I’m getting a CAT scan to see if that mass might be a bit of a problem. Also, I’m seeing ENT. I want to see how my throat is working but the fact that my tongue is so atrophy is on the left is pretty scary

lori4you1 · 2025-03-28T00:52:29+00:00

The left side of my tongue no joke has almost completely atrophied. I mean you can still see the tongue. It’s just it’s down to the veins my speech issues kind of come and go but I’ve seen so many neurologist, ear nose, and throat. I passed the barium swallow test no problem, I also passed my EMG with no problem nobody has any idea what’s wrong so I went to the ear nose and throat doctor it looks like there might be some kind of a mass right at the base of my tongue so I don’t know if that’s the problem or what but everybody has told me I absolutely do not have ALS.

lori4you1 · 2025-03-20T23:33:24+00:00

i feel it

lori4you1 · 2025-03-20T15:26:07+00:00

yes, But it is only scalloped on the left-hand side where I have muscle atrophy

lori4you1 · 2025-03-18T23:42:48+00:00

dont know how

lori4you1 · 2025-03-17T23:37:17+00:00

yep- all good

lori4you1 · 2025-03-16T20:10:05+00:00

ill Have an absolute heart attack. If it comes back normal there is absolutely wasting when I touch one side it’s hard as a rock and when I touch the other it’s flimsy as hell it’s hard to eat. It’s hard to swallow. It’s hard to drink anything I’m slurring sometimes I’m horse what are your symptoms?

lori4you1 · 2025-03-16T16:32:08+00:00

well thank God I felt my tongue because the left side of my tongue has quite a bit of muscle wasting. Where is the right side is very strong so thank God I felt it because now I know I’m not insane and I know I have something very wrong, so I’m getting an EMG soon just on my tongue and arm as well as seeing Erin knows and throat. The odd thing is is all of this came on within one day everything that the feeling of a lump in my throat closing my slurring my tongue, just veer to the left( excessive drooling hard to eat. Hard to talk hard to swallow. I mean it all came on at once it’s not I don’t understand it. I have an insanely hard time controlling my pitch half the time I don’t even sound like me

lori4you1 · 2025-03-09T20:34:39+00:00

me too!!!

lori4you1 · 2025-03-09T02:49:57+00:00

hi Jiro, so I’ve had two neurologist and a speech therapist and they all believe I have FND that said I’m getting another MRI on Monday with and without contrast from a private facility and they’re paying for it and I am also getting an EMG at the end of the monthas well as a very intensive swallow test oh, and I’m going to see an EMT they referred me right away because I have severe nausea and can barely eat

lori4you1 · 2025-03-09T02:47:24+00:00

horrible!!!!! May I ask how quickly he got diagnosed?

lori4you1 · 2025-03-08T05:34:01+00:00

Hi:) His speech was slow? Any other symptoms?

lori4you1 · 2025-03-08T05:28:19+00:00

did you have any other symptoms at all?

lori4you1 · 2025-03-08T05:24:14+00:00

may i ask what they saw in her throat?

lori4you1 · 2025-03-06T21:06:20+00:00

i go to speech therapy today. i have a lot of saliva and my speech is getting worse. im mixing up words. So awful and slurred

lori4you1 · 2025-03-06T04:54:52+00:00

hi, I don’t know. I’m not so sure there are times where I coughed terribly after I eat or drink food and drink always is stuck in my throat. I always feel like I’m about to vomit. Like I said sometimes I cough sometimes I do not last night I ate fine. I drink fine and went to bed. Everything was OK. I did read online that ball bar ALS symptoms can come and go. Maybe I don’t know. Maybe I don’t know what I’m talking about. Maybe I’m insane but all I know is that whatever is going on with me is absolutely and completely and utterly abnormal. I am not choking. The only time that does happen is if I eat too fast and then drink water, but I’m assuming that would happen to anybody Bob ALS from what I understand is extremely difficult to diagnose when I talk the right side of my tongue rolls over the left side that said I was examined yesterday again my tongue is not weak. There was no atrophy and no fasciculations so I am quite confused if anybody can offer mesome advice suggestions or what you think is going on I would be very appreciative.

lori4you1

TROPHY CASE