Bulbar onset

[joycecaroll]

I just have to vent this. I know I'm very obsessive, but I just nead somewhere to write my thoughts knowing that maybe someone will answer. If someone feels I'm to obsessive, don't read it. I don't need to hear how obsessed I am, because I do know this.

I'm so scared I have bulbar onset ALS.

In july I had few tongue twitches one day. They went away after about 10 seconds, but it scared me so much. So I had an EMG done on my tongue late August, and it was clean. Couldn't stop thinking about it even though my EMG was clean.

In September the tongue twitches came back. Now they where daily. Maybe 5-6 a day, always single ones each time. It was horrible, and still is.

I'm scared I'm in the hyperexcitability phase, where the only symptom is fasciculations. This phase can last up to 8 months. I'm trying to find out if even in this phase, one would expect to have more fasciculations than tops 10 a day, but no one seems to know for sure.

But today I had a pretty good day. Felt confident after talking to someone about this subject, and it really helped. This plus the fact that I hadn't been getting any tongue twitches all day made me feel like wow, I've been scared about nothing all this time.

Then I came home and got the idea to look at my tongue with a flash light. Saw all kinds of twitches and got really scared. Then I got this BIG twitch in the back of my tongue that I could both see and feel. Then I noticed that if I put my tongue on my bottom lip and tried to relax, I had a persistent twitch a the tip. Now I'm so scared again. Don't know what to do at all.

[Ghayes420]

1.) you clearly don't have bulbar onset because your EMG would have shown it. EMG are a predictor of weakness. It can detect changes in the muscle and can tell if weakness is coming. It is predictive for up to a year. Therefore your tongue twitches are not indicative of denervation.

2.) " I am scared I am in the huperexcitability stage where the only symptom is fasciculations. This can last up to 8 months."

This is the main reason I don't like to come to this forum. People who type up something they read somewhere and state it as a fact. The above statement is totally incorrect. Sure neural Hyperexcitability in theory 'can' proceed anterior horn cell death but where in the world are you coming up with this arbitrary time frame of 8 months? That is incorrect.

[joycecaroll]

This is the main reason I don't like to come to this forum. People who type up something they read somewhere and state it as a fact. The above statement is totally incorrect. Sure neural Hyperexcitability in theory 'can' proceed anterior horn cell death but where in the world are you coming up with this arbitrary time frame of 8 months? That is incorrect.

1. Would the EMG have showed something even if it was in the hyperexciteble phase?

2. So sorry if I offended you. It was not my intention at all. Someone told me 8 months, so I'm just saying what someone else told me. But I would love to hear what the actual time frame is, if 8 months is not correct.

[Ghayes420]

1.). Yes

2.) no need to apologize. Just because someone tells you something, unless they are a neuromuscular specialist, then it's not worth repeating here. If you wanted to bring it to us as a question, then we can clarify your concern.
To answer your question, Was your clinical perfect? Then zero months wait. Was your clinical exam not perfect, 18 months. 99% of us are in the first group.

[joycecaroll]

It was a neurologist who said it.

Well, I have not had a clinical in my bulbar area, more than moving my tongue really from side to side and showing my tongue while saying "ah".

[joycecaroll]

By the way, I have to clearify something. What bothers me is that the fasciculations in my tongue are daily, and becoming more persistent. Both my boyfriend and my best friend have visible tongue fasciculations that can be felt, so I know tongue fasciculations in itself are not malignant. But I'm worried since mine are daily, it makes me think "something is progressing".

[Ghayes420]

Your symptom is very much in line with the rest of the people here. Take a moment to do a search (on this page, not Google) for tongue fasciculations and you will find a plethora of information and reassurance.

[misterjuanperalta]

My clinical was not perfect, but I have Thoracic Myelopathy to say the least. My tongue twitches too, as well as my face and lips. I guess I'm in the 18 months category. All EMGs were normal, even in tongue.

[Ghayes420]

Why would you be in the 'watch me' category if they were able to trace your clinical deficit to a root cause? That excludes you.
Let me restate. If your clinical showed a deficit of some kind and they can't trace said deficit to any root cause, then you will be watched by your neurologist for a set period of time.

[misterjuanperalta]

Thanks. Can you link a study where Clean EMG rules out hyperexcitability stage?

[Ghayes420]

No I cannot send you a link. I can only offer the collective knowledge that was shared to me by six of the top neurologists in our country. Sorry, you are going to have to trust me and not some pub med article. Difficult, I know.

[RobJ]

Ghayes420,

Are you familiar with Tribal Leadership? Read up on it. You are a stage 3 tribal leader. Everyone is wrong except you.

I'll word it as a question. Can you name the six of the top ten neurologists in the country? When and How did you talk with them? What did you ask? What did they say?

[Ghayes420]

Stage 3 Tribal Leader, that soundss fine to me. And yes, with regards to knowledge of this condition, I am very arrogant about it, I admit. Because I honestly have spoken to more experts, face to face, than anyone else on this forum. I feel I have plenty of knowledge on this topic so its very easy to speak 'matter of factly' to newbies who don't quite understand what is happening.

A list of the top neuros in the country?. Obviously this would be subjective. The two top ALS specialists in our country (USA) (based on references, comments from other specialists, time doing their specialty, papers written, etc). are Dr. Smith of Harvard Mass General and Dr Miller at Forbes Norris ALS Clinic in San Fran. You are welcome to argue the ranking.
I have also spoken to Director of Neurology at Stanford U (now at Norris) and have also spoken to the Director of the ALS Clinic at UCSF (ranked #3 neuro clinic by USA today) as well as the Dr. McEvoy at the Mayo Clinic at the main campus in Rochester who teaches neuromuscular disease as well as sees patients.

Can you name the six top neuros in the country? No. But I can tell you that you don't become a Director of Neurology at a Top 5 ranked institution by smoking weed and eating Cheetos.

How and when did you talk to them? Various and multiple times over a three year period.

What did you ask them? What did they say? Too long to type here. Feel free to look up some of their feedback on my previous postings from a while back. I also posted my report from the Mayo clinic publicly on the BFS FB group if you're interested as well. If you have any specific sensitive questions, I would be happy to answer them in PM.

I apologize if I sound arrogant (kinda) but It's when I see things stated like there are above, they need to be corrected. Those are the type of statements that are false and can bring anxiety for some when in fact it is an inaccurate statement.

[Ghayes420]

By the way, RobJ, weren't you the guy in the other posting who was trying to justify waiting 4 years before claiming a benign dx? I think you said something like "the very best neuros wait 4 years"
I read your past postings and highly suggest to you that you gain your knowledge straight from the horses mouth instead of reading research papers on PubMed. I appreciate you willing to challenge the collective knowledge of this group. Without somebody waving their arms and spewing ignorance, there is no way to advance the truth to everyone else.

[RobJ]

You've been picked out and you are full of it!

You keep telling everyone they don't know, you don't know either. You are reading the same literature that everyone else is reading and you are on this forum because you have doubts just like everyone else.

You've got 3 years of experience, talking to a few. You've got nothing buddy!