ALS Questions

[Addles]

Hello everyone, I just had some general questions about ALS that I’m hoping to get answers to. (20yr Male)

I went to my neurologist around early February 2022, with regards to some complaints of weakness in my limbs along with some twitching in my calves and feet, after a thorough neuro examination, they found that all my reflexes and muscles were at full strength and believed the weakness I was having was all perceived. He ordered an EMG/EVG to see if there is a problem such as carpal tunnel. He also diagnosed me with BFS

However recently (the last two weeks) I’ve found it harder to swallow, such as I’m drinking and my throat seems like it’s closing/becoming more tight as I drink, eating is generally fine because it’s usually one motion/swallow but there is still some tightness. And sometimes even just trying to dry swallow (swallow without food or water) it’s like I can’t or I have to think about it. I’ve also been getting signs of raspiness in voice and tripping over my own words when talking

I guess my questions would be
1) does Bulbar onset usually start with swallowing issues, or do they follow tongue issues (slurred speech etc.) and is the swallowing issue, more of a choking feeling as if food is going down the wrong pipe, or just the inability to swallow in general

2)does ALS in general progress this quickly (within 1month) from the “weakness” to the bulbar symptoms. I wasn’t showing bulbar signs that I know of at my neuro exam.

3) when I get my EMG done in mid March, it’s for one of each limb, one leg and one arm, would that show ALS if my problems were from bulbar onset, or would they have to test the bulbar region.

I appreciate all your time and responses, and wish everyone a blessed day

 

[lgelb]

1) If you had clinical bulbar dysfunction, the neurologist could have seen it. It couldn't have arisen at such scale as you describe, in a couple of weeks.
2) No, especially not with a neuro exam in between.
3) The hallmark of ALS is certain abnormalities even in muscles you think are fine. From your description if you really had ALS, it would be limb onset, so the EMG order reflects that. It will not "miss" ALS if you have it.

Much of the US is very dry and full of tree pollen and other allergens right now. I would be looking at dry mouth/hydration/humidification, your furnace filters/allergies, GERD, stress and sleep, as approaches to your issues, presuming the EMG does not suggest ALS.

Best,
Laurie

 

[Addles]

I will post my EMG results when I have it done in march, but I appreciate the knowledge shared, it means a lot. Best wishes

 

[Addles]

Quick Update before my EMG Monday:

I spoke with my neurologist via messaging this week and he wanted me to get a few blood tests before my upcoming EMG. I got a CK Blood test and an Anti-AChR Antibody+ gMG test (to test for MG) my CK Blood test came back well within the limits (130 U/L), and my neurologist committed on it "No muscle breakdown detected, that is reassuring." I have also talked with my neurologist about testing my bulbar region during my EMG along with the original one arm and one leg, and he said he will make that decision the day of the EMG (I'm assuming if he deems it necessary) the results for the MG test haven't came back yet

As for my symptoms, the swallowing symptoms seem to be getting a little better, I accidentally did a controlled test, one of the medications I started recently (Hydroxyz Hcl) might of been behind the "dry mouth/swallowing issue" I switched back to Zyrtec for allergies and that also has seemed to help the airway. I have an appointment the 14th with an ENT to discuss treatment for the throat issues (as long as no problems are seen on the EMG). The one thing that hasn't been getting better is the twitching/ fatigue which I think might be a result of when I do get anxious I tend to do "strength" exercises to be sure that I haven't developed any weakness that I can notice, such as standing on my toes/heels, being able to screw and unscrew caps with both hands, do stair jumps and stand on each leg by itself, pushups etc. which I can do all of those with ease. I know the ultimate and really only definitive test will be the EMG. Another symptom which I believe is a good thing from what I've read in the "Before you Post" sticky note is that I have a lot of twitches, but they are throughout my body, they are mostly in both calves and bottom of feet and thighs, but also I get them in both forearms, back, butt, cheek/lip etc. I will hopefully post my final message on Monday after my EMG.

Questions:
1) Do people who have ALS usually have abnormal CK levels since it detects muscle breakdown?

2) My voice has seemed different, not so much slurring but more of a tone change, like it seems to have more vibration but I can still change pitch etc. Generally does Bulbar effect the voice tone/sound before it effects slurring? and can people with ALS gargle or does the loss of muscle function prevent that?

3)If twitching is caused by ALS does the twitching pattern and severity alter or does it remain relatively the same? ex. I notice that my calves and feet twitch 2-3x more at night laying down then if I'm walking around or when I wake up? if it was ALS would the twitching be just as bad in the morning as it is at night?

4)If my twitching is caused by BFS would that show up on the EMG? I know the EMG picks up fasciculations so would I expect there to be fasciculations if it was BFS, I'm assuming both ALS and BFS cause EMG fasciculations but how do they differentiate the two when examining the results?

Thank you for any responses and I will hope to report good news back on Monday
Everyone have a blessed day

 

[lgelb]

1) Some do. Some don't.
2) Depends/ultimately, usually not
3) Widespread twitching is not part of ALS onset, period
4) An EMG can show fascics that are benign if other findings are not concerning. Or it may not pick up what you think are fascics, at all. Neither is important vs. whether you have ALS or not. ALS is not diagnosed only by fascics. The EMG collects lots of data and thinking about ALS requires multiple results to come out a certain way, not just one number, and across many areas tested. There is no point in trying to summarize it because it does not apply to you, honestly.

How do you know whether a house was built well or poorly? How do you know which car to buy? There are many factors that go into it.

What I can assure you is that if you have ALS, the EMG will provide evidence for that. And if it doesn't, you should focus on the areas already mentioned.

Please don't post again until after your EMG.

 

[Addles]

Final Update:

I just got back from my EMG/NCS and I can report good news,
the EMG came back clean except for fasciculations which confirmed his diagnoses of BFS. There were no Fiscs or + waves, which he says rules out anything like ALS 99.999% so I'm in the clear.
I wish everyone a blessed day, Thank You lgelb for your knowledge! and assistance!

​

 

[lgelb]

Thank you for checking in -- it does help others. Enjoy your life and stay safe.

 

[Addles]

Im sorry to be back but I was examining my neurologist exam on the 7th of February and he noted

DTRs: Symetric 2+ bilaterally in the biceps, triceps, patellar, ankles. Downgoing plantar reflexes bilaterally. He has 2-3 beats of clonus at each ankle.

is that normal, I heard that clonus is a sign of UMN disorder, its been almost two months since that exam and I haven't had any weakness with my legs that I notice, I'm just afraid I have ALS that is starting in the UMN and did not pick it up on the EMG because it hasn't effected the LMN yet

Can clonus ever be normal?

 

[lgelb]

A couple of beats bilaterally at the ankles is not a big deal. DTRs 2+ and downgoing plantar reflex are normal. The only thing I would want to be sure of is that you are not taking any combination of certain antidepressants, migraine meds, pain meds, and other drugs, including certain supplements and street drugs, that could be causing serotonin syndrome. That's why it's important to be honest with doctors about what you take.

And if you only had UMN problems that didn't show up on EMG, that would not account for all the issues that you have mentioned, plus you were examined with an eye to all motor neuron diseases and anything else neurological.

 

[Addles]

I have started a new Anti depressant since my EMG to help with my anxiety and health anxiety, It still is taking some time to fully kick in, I was just getting stressed out when I saw "Clonus" on my report and through many dark nights looking up UMN signs and clonus coming up, I just wasn't sure if it was normal or not, I wasn't taking any medication at the time of my exam but I am just still a little anxious about this, even though my odds are like 1:1,000,000 below is my full neurologist exam I had, let me know if there is anything I should investigate more, if not I'll leave it here and try to keep moving on with my life - Thank you (I took off any personal info from the exam) General: Well-nourished. In no apparent distress. Psych: Good eye contact. No evidence of hallucinations, No SI. He is restless, fidgety and anxious appearing. Eyes: PERRL. Eyes appear aligned. No scleral icterus. Ophthalmologic: HENT: Head is atraumatic normocephalic. Nose has no rhinitis. Oropharynx with normal mucosa, tongue midline. No oral trauma. CVS: Regular rate and rhythm, regular radial pulse. No murmurs. Respiratory: Clear to auscultation bilaterally. No coughing. Normal inspiratory and expiratory movments Derm: hemangioma left flank of back. Good tugor. Musculoskeletal: Normal muscle bulk. No abnormal twitching observed. Heme: No lymphadenopathy. No ecchymosis. Neuro: Mental status: Alert and oriented x4. Concentration and judgment intact. Memory intact to recent and remote events. General knowledge is good. Speech and language clear and fluent. Cranial nerves: CN II: Visual fields intact to confrontation. Visual fields are better than examiners, normal. CN III, IV, VI: Pupils are equal, round, and reactive to light. Extraocular motions are normal. Accommodation: intact. Nystagmus: none Diplopia: none No ptosis. CN V, VII Face activates symmetrically and sensation is normal. CN VIII Hearing: intact to conversational voice. CN IX, X Palate: symmetric with normal elevation; uvula midline CN XII Tongue: not atrophic Fasciculations: absent Tongue deviation: none Otherwise 2-12 are within normal limits as tested. Motor: He is very strong, I pushed with great force and could not overcome his motor strength. Deltoid/proximal elbow(bi/triceps) Hand/distal TONE Right arm: 5 5 5 Normal. Left arm: 5 5 5 Normal. HIP KNEE ANKLE Right leg: 5 5 5 Left leg: 5 5 5 Sensory: Light touch intact. Vibratory within normal limits. Coordination: Finger to nose in upper extremity movements do not reveal dysmetria, Heel-to-shin in lower extremity movements do not reveal ataxia. No dysdiadochokinesis. DTRs: Symetric 2+ bilaterally in the biceps, triceps, patellar, ankles. Downgoing plantar reflexes bilaterally. He has 2-3 beats of clonus at each ankle. Gait: Normal Based. Steady. Good arm swing. Negative Rhomberg. He can heel and toe walk easily. He can tandem easily. +Tinnel's on the right and + but less so on the left.

 

[lgelb]

The only abnormality there is the positive carpal tunnel sign (Tinel's sign), but that's pretty easy to evoke and doesn't necessarily mean you have a problem, though to avoid one developing, it's always good to take breaks from keyboarding anyway and not rest on your elbows. Nothing to suggest ALS or anything like it.

If you're still anxious about this after your new AD has had a chance to take effect, please consider counseling. Spending your time in a rabbit hole is no way to live. And maybe time to stay off your browser, limit session time, block the sites that scare you, etc.

 

[Addles]

Thank you so much Laurie I appreciate your help and patience with me, this is gonna be my final message on here (the mods or whoever is in charge can close this thread, for I am gonna move on with my life) I just want to say one more big thank you to you Laurie and all the other members on here who provide information to those dealing with a crisis like I am, but I now realize that this is not the place for me, or really any other person like me (young,anxiety riddled).

Just one last thing I suggest to whoever stumbles across this and is panicking they have ALS, the truth is your mind is a powerful thing, I wasted the last 2-3 months worrying about this when In reality I had no symptoms other then my own mind perceiving them, I do suggest whoever stumbles across this post to check out reddit forums for people with anxiety and BFS, you will notice a lot of people are going and experiencing a lot of the same symptoms you are facing and it is reassuring seeing and reading of others like you who are scared and anxious like you. Ever since I began anxiety treatment a lot of my "symptoms" vanished, swallowing issues, perceived speech issues, and even twitches. Please if you are in here like I was, anxious about a rare disease this is not the place for us and I apologize to all. I've spent too much of my days afraid to do anything when in reality it was my own head making things worse.

Please if you are scared check out the subreddits
r/Anxiety
r/MuscleTwitch
r/BFS

But also make sure you talk to a professional for your mental health as well. Take care everyone,