JALS worries, is it worth pushing for an EMG

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Madeline

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I've avoided making a thread here for a while but things keep happening that exacerbate my worries. I've read the sticky.

First of all I appreciate all of the time any of you take to respond to this thread. You are all doing God's work dealing with so many heavily anxious people for nothing in return.

Being up front, I'm only 18. I'm well aware of the chances, but I just want to hear someone's input on whether I should try to push for an EMG.

I've had widespread twitches for about 3 or 4 months, most commonly historically in my calves, thighs, arms, back, and chest. However recently this twitching has spread to my tongue (at rest) and other parts of my face, especially the right side of my lower lip. This specific area has been twitching pretty constantly for the past 3 days, which is a slower twitch that almost feels like something is pulling on the muscle.

When I smile, it's slightly uneven with the side that twitches a lot not smiling as much.

I find that when I'm talking I stumble over my words a lot. Sometimes the word just doesn't come out right and I have to repeat it. I've also got a persistent itch in my throat which has led to a bad cough (which never gets rid of it).

My gait has been limpy for a long time, and other people have noticed this and brought it up to me. My leg muscles are also very commonly sore and stiff, especially in the morning. In fact, a lot of my muscles are sore a lot of the time.

If I squat down or apply any force to my legs muscles in certain ways, my legs start to shake violently out of control. Same applies to my arms but to a lesser extent.

I've lost about 5% of my weight over the past 4 months (and I was already pretty underweight before this all started). I don't try to waste my time looking for atrophy since I know I would probably just find a normal dent and get worried about it.

My neurologist ran a basic exam a few months ago and said I had hyperreflexia in the legs. His exact words were "very brisk" and the followup report itself said a diagnosis of hyperreflexia. He scheduled another MRI of the spine over 6 months out. He said that he doesn't think an EMG is necessary unless the MRI of the spine shows nothing abnormal.

I've had a clean MRI of the head, and almost every blood test imaginable has also been clean.

So my question is, does this sound like JALS? From what I've read, it presents different from normal ALS and often has a lot of the things I'm experiencing. However, I don't want to be a Google doctor so I want to ask all of you: do you think I should push to get an EMG sooner?

Again, thank you for your time.
 
The most common form of JALS is very aggressive and shows significant disability very quickly. This doesn’t sound like you.
in general we do not advise people to push their doctors for specific tests. If things have changed since your last visit so you think the current plan is inappropriate call and ask for a reevaluation. I do wonder why the spine mri is scheduled so far out? Either you need one or you don’t unless they are following up on a previous one. Is it an insurance issue?
 
How quickly would that disability be? Also how common is this most common form?

The spine MRI is far out due to scheduling issues and insurance. I don't really understand what good a spine MRI does if I'm having symptoms in my face though.

Again, appreciate the time.
 
even the “ common” form is extremely rare. And the people with it are usually dead in under a year. In a wheelchair in a couple of months from first symptom. Not what you are saying. Please call your doctor and ask for a reevaluation. This really is not a good place for you
 
You don't push doctors to do what you think you need. You explain your symptoms and let your highly trained and experienced doctors follow the path that shows clinically. As a non-medical person you would not be expected to have any idea why any particular test is appropriate for any symptom.
Being here is the worst thing you can do for yourself. Please go back to your doctor and stay away from reading things online.
 
After messaging my neurologist a bit, it's my general impression that he doesn't care to explore other possibilities until after the MRI. He told me that his suspicions are MS or some spine pinched nerve. Neither of these possibilities really make much sense to me given my symptoms and prior test results...

Anyway, I have a couple more questions if you would be willing to entertain them:

1. Is body-wide atrophy ever seen in ALS early stages? Would you ever expect two legs to atrophy at the same time before noticeable clinical weakness? I say this because it feels like the skin on my legs has become more loose by day.

2. Is muscles shaking violently when under a little bit of strain indicative of weakness?

3. When I was asking about how common the form of JALS was, I was wondering about how common compared to other JALS cases. What % of JALS cases does that aggressive form make up?

4. Are internal vibrations seen with ALS? Not like fasciculations but more of a buzzing feeling. I get this occasionally in my feet.

Normally I wouldn't be worried about such a rare disease but my combination of worrying symptoms (fasciculations especially in tongue, hyperreflexia +3 in legs, cramps and tightness in legs, very shaky legs, hand tremors) and test results (clean head MRI, countless clean bloods multiple times) seem to rule out a lot of other possibilities and point towards this.

I'm sorry for being so persistent but I just can't kick the feeling.
 
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No
No
% wise of JALS- I am not sure but know it is incredibly rare. However, since this does not apply you, it is irrelevant.
No

You have not outlined anything to do with ALS onset, JALS or otherwise. Please print these posts and show them to your parents so they can be there to guide you past this unfounded fear.

Good luck to you. You are so young; don't waste your time on a disease you do not have. Take good care.
 
Did you read my last reply to you?
YOU don't push doctors to do what YOU want. I don't think you realise how much time could be wasted if doctors listened to you posing your theories. Some conditions need early treatment and could be missed.

Your questions and then I think we are done here.
1 Nope, and loose skin ain't atrophy

2 Nope, have you read our post here - Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

3 Nope looking for 'aggressive JALS' doesn't come into a % question we can answer

4 Nope - again if you had carefully read the post I've linked you would see we took a lot of effort to explain the answers to these common questions people ask that have nothing to do with ALS.

Your 'worriesome' symptoms do not even remotely suggest ALS.

If you can't kick the feeling, please get urgently to your doctor for help. Your anxiety can be treated, truly.
 
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