Bulbar Onset?

Status
Not open for further replies.

Battilest

New member
Joined
Mar 19, 2022
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Good morning/night everyone!

I just have a few questions about bulbar als I am hoping to get some answers to

Background: 20yrM (almost 21)
--------------
In late February I had a NCS/EMG done on my arm and leg because I was dealing with some issues with tingling and weakness (Im aware tingling isn't an ALS symptom, but that's why I got the EMG done) and everything came back fine: Stable motor neurons, no Fibs or + sharp waves, or any signs of nerve deterioration. The only thing he saw were Fasciculations. I didn't believe that my body symptoms were due to ALS but my neuro suggested it thinking it could be neuropathy etc. also my neuro exam went well when I saw him early Feb before the EMG. My body symptoms have seemed to all get better even the fasciculations for the most part.

However all of a sudden my eating and drinking has felt off, I am a naturally anxious person and take prescribed medication for it and see a therapist quite frequent. I am not sure if my swallowing symptoms line up with what bulbar symptoms are like when it first onsets, but they havent gotten better for about a week and it is giving me a bit of anxiety.

Questions
-----------
1) If I had Bulbar onset would it be shown on a body EMG if my symptoms were strictly in my throat/bulbar region
2) Ive read that Bulbar ALS swallowing issues is usually choking on food/drinks, mine is more of a food seems to slip into my throat from my mouth and or it sticks to the very back of my tongue or throat right by the epiglottis. I haven't really choked on anything.
3)Does Bulbar ALS usually happen in JALS, I know ALS in general is relatively rare especially in people less than 25yrs, I know anything is possible but is it a common form in JALS
4) Would a Barium Swallow show if these issues were due to Bulbar ALS? or how do they diagnose Bulbar since its different from spine onset
5) is it common for bulbar to show up in the throat/swallowing before it effects speaking? or does speaking usually come first then swallowing?
6) Could this all just be anxiety? can anxiety make you feel like you have swallowing issues/sensations but in reality you are fine? Like I can go run a tap and drink from it fine, it just seems as I think about it, i get the sensation that its going down the wrong pipe

Thank You for any answers you can give me
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,352
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
1/Yes, in ALS, the EMG would show motor neuron damage even in some areas that you thought were fine, and certainly in areas that weren't.
2/Most likely that is dry mouth related to anxiety.
3/Like ALS in older people, most younger ALS has a limb onset.
4/A barium swallow may help diagnose various conditions, if swallowing is abnormal, but it wouldn't be a clear sign of ALS without other results such as exam and EMG
5/Some of each, in ALS
6/Yes. The mind is very powerful. Think about everything it has gotten you through so far. When you think about something like swallowing and it gets harder, that is your mind exercising its power.

I don't think you have ALS, and the EMG supports that. Why not try a different counselor, one who focuses on health anxiety, and see how far that takes you? There's no point in wasting your life in needless fears. Also, the medication(s) you are on can have their own side effects, so it's important to periodically re-evaluate with medical support whether you are on the best combination for you. Often a therapist that doesn't have a stake in what's happened so far can have a new perspective.

Best,
Laurie
 

Battilest

New member
Joined
Mar 19, 2022
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Thanks Laurie for the answers! I switched to a new medication (Prozac) which might be attributing to some of those issues, as I know it can cause bad anxiety the first couple weeks until your body gets used to it, Ill call my therapist place Monday when they open and see about a therapist that deals with health anxiety. I always seem to go to the worst case scenario with my health. I go online and read the stories of people getting EMG's done that come out clean then end up with ALS shortly later, which I know you can't rely on those stories to well. And I figured getting knowledge from people who actually have went through it or have helped people with it would be better than furthering my anxiety looking up things on google

My biggest concern was my #1 question because I know an emg is pretty standard in ALS diagnoses I just wasn't sure if I had bulbar onset would it of shown in my arms or legs emg, or if I should look for a strictly bulbar emg or barium to be 100% especially with my bulbar symptoms occurring after the emg

Thanks for your help and suggestions once again!
 

Battilest

New member
Joined
Mar 19, 2022
Messages
3
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
Update: I have an appointment for a second opinion at U of M with a Bulbar specialist, my regular neuro says getting a second opinion along with my therapy and medication should help put my mind at ease.

One question?
What are the swallowing symptoms like in Bulbar ALS? for example how consistent do they happen, im guessing regularly? more than once/twice a day? what types of foods/drinks are the first to be detected?

Thank You!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,352
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
There's no point in trying to address your questions. You would know it if you had ongoing bulbar dysfunction (which answers your question about how consistently deficits show up in ALS), and the EMG would have shown abnormalities that it didn't. While you're waiting for your appointment, my suggestion is to live the life that others here cannot, which may include helping those less fortunate than you are.
 
Status
Not open for further replies.
Top