2 emg's, still not convinced

[blackpetunia]

Keeping it short, I have three questions.

1. I’ve had two emg’s done by two different neurologists. I didn’t think the first one was done correctly and I’m worried the second one wasn’t either. The second neurologist did the emg at my request because of my ALS worries and also to test the median/ulnar nerves. He inserted the needles first along with the electrodes. He then did the NCS part with the 2 prong thing with the needles inserted. Was this done correctly? I’ve never heard of anyone having an emg like this before.

2. The first neuro told me that my emg was completely normal but when I got the report from him it showed 1+ fibrillation in my upper paraspinal. I asked the second neuro about it and he said it’s nothing to be concerned about, probably a pinched nerve or something. He did not re-test the area. Aren’t all fibrillations/positive sharp waves bad? Is this fib related to ALS?

3. I am getting pretty concerned about frontotemporal dementia. I have several symptoms of it: feelings of euphoria or just overly happy feelings usually when I’m happy about something or I’ll just randomly have a very positive outlook on a bad situation when I’m not normally like that, depression, muscle spasms and I have a pretty bad tremor in my hands but mostly my right one.

If I squeeze my eyelash curler my right hand shakes really bad. I also have trouble finding the word I want to use and sometimes feel like I have trouble putting sentences together. Mostly around people I’m not super comfortable with though.

I also have what I believe is myoclonus. Just in the past couple weeks I've had random involuntary jerks like the ones you get when sleeping but I'm not asleep. Just yesterday while sitting at my desk at work my left leg just randomly kicked out slightly (it was crossed over my right leg).

I am a 30 yr old female. I really don't know what to do, I feel like I just can't believe the neuros when they tell me I don't have als because I've had bodywide twitching for like 6 months now.

 

[codyclan]

Petunia,
What is that you can’t do? Shaking when squeezing an eyelash curler is not an early sign of ALS and neither is twitching. Twitching means nothing, normal people twitch. Neurologists spend years in training, do you really think you know more than a neuro because you’ve been doing some internet searches? You do not have signs of ALS and two Neuros and two EMGS support the fact that you don’t have ALS. Continue to work with your primary doc to address your concerns and anxiety, but put ALS out of your mind.
Best wishes,
Tracy

 

[Bestfriends14]

What is it you cannot do, Petunia? Can you button shirts or open a water bottle? Can you raise up on your heels and toes? Can you cut your fingernails? I bet you can, therefore, you do not evidence ALS symptom onset.

As for self diagnosing FTD, that's not how it works and those are not the symptoms. So far, you think you know more than the neuros who have spent 15 years of post secondary education and training. Why is that? You've been told you don't have ALS by professionals and by what you write, it doesn't sound like you do. Why are you trying so hard to find a diagnosis? There's something really not right about that. Do you see that?

You're now asking strangers on the internet to diagnose you because you won't take the word of a highly trained professional. Why would you believe anyone here if you won't believe them?

Petunia, you don't have ALS, but you do have a definite issue in searching to be diagnosed with it. Perhaps you should seek treatment for that and let ALS go.

Good luck to you and take good care.

 

[blackpetunia]

<quoted text removed>

Thank you for your kind comment. I would like to provide the following link about frontotemporal dementia:

https://www.ninds.nih.gov/Disorders...gh-Research/Frontotemporal-Disorders#symptoms

It doesn't specifically mention the myoclonus but it does have all of my other symptoms. Including muscle "rippling" which I do get in addition to my regular twitches.

 

[lgelb]

Yes, Petunia, there is a long list of symptoms that can be associated with FTDs, because each of them is part of another illness. That you have part of the laundry list doesn't mean you have ALS or any neuromuscular disorder.

Two EMGs showed that the lower motor neurons that control movement are in good shape. A fib in one muscle is not a red flag.

The many movement "niggles" you have listed, that all of us have and that awareness invariably magnifies, do not signify ALS, either. And while FTD can be a feature of ALS, it is not present at onset and there is not the self-awareness that you have. If you read the stickies, you know that twitches are not diagnostic. Nor are word-finding blips.

But sleep, stress, exercise and diet are all areas that can contribute to everything you described, so these could all be areas to work on.

In short, your picture does not suggest either FTD or ALS.

You say that you can't believe two neuros, so are you going to believe us? Or, whom are you going to believe? If you answer "no one," you have an obsession that suggests counseling.

Best,
Laurie

 

[codyclan]

Petunia,
You conveniently skipped over the statement "Moreover, they lack any awareness of their illness, making it difficult to get help". You are cherry picking symptoms. Again, no ALS--as reinforced by 2 neuros and 2 EMG's. Time for you to move on.
Best Wishes,
T

 

[blackpetunia]

Thank you for the responses. I did read on an ALS site that sometimes FTD symptoms are the initial symptoms of ALS. I'm just really scared. I keep seeing responses on here that local neuros are no good and the two I went to were local, not neuromuscular specialists. I also still don't have an answer on whether my emg's were even performed correctly.

 

[Nikki J]

I have seen ALS and FTD in combo and separately multiple times in family members and others. You are not describing it.

We weren’t there to see the emgs performed but if you are asking if doing the ncs after the emg somehow invalidates the testing no it does not.

If you do not believe your doctors and don’t believe us then you can continue to seek more opinions though your time and money could be better spent elsewhere

 

[Vincent]

Ok here goes. You have been seen by 2 neurologists, had 2 emgs, and both said NO ALS. What's your next step? Going online and asking people who are dying with no medical training to diagnose you remotely over the internet. Sounds kind of nuts. That's because it is. You do have a neurological condition, what we have is a hardware problem, yours is entirely software related. Your need for someone to tell you you have a fatal disease is not healthy. If I was given 2 clean emgs I'd be doing cartwheels. You need to focus your health anxiety on your health anxiety. You don't belong here. People who have limited time really don't need to spend time massaging your neuroses.
Vincent

 

[lgelb]

It is hard to do an EMG so badly that the widespread damage that ALS causes is missed entirely. It is even less likely that two neurologists both failed.

You can check that the EMG examiners were certified if that is their specialty.

You can also check that the neurologists are Board-certified.

What we say about run-of-the-mill neurologists is that we wouldn't accept an ALS diagnosis without a second opinion from a neuromuscular center. It's a life-changing diagnosis.

At no time have we said that everyone with twitches needs to see a specialist neuro to have ALS ruled out. If everyone did that, there would be no capacity for people who actually have ALS.