Here I am, back again. Clean EMG, now dirty one.

[Blurblurb]

Hi guys,

So I was on here a while back complaining of crampy muscles, twitching in my calves, fatigue and pain. I went in to a neurologist and got an EMG (it was about three weeks after the symptoms started) and it came back clean. Had a second option EMG a week later - also clean.

The doc suggested that I come back three months later for a followup with an ALS doc who specializes in these type of emgs just to help my anxiety and keep me from worrying. Over this time, my right hand clumsiness has gotten worse (and that arm has become perceptibly smaller in the tricep), I can't work out and my cramping has gotten worse. Expected to go in for the EMG and get a "still not ALS, its probably just a bug".

This morning, I had the followup EMG. It came back "suspicious" (or past the typical borderline abnormal with irritability, fibrilations and polyphasic Fascics) in two spots (one is my right calf, which twitches more than the left, and the other was my right arm, which is the same I've been experiencing clumsiness with). He then said he couldn't rule out ALS any longer. He says I now need to see the UofM ALS docs for more testing.

I have harshly brisk reflexes but no clonus or babinskis. The finger flick test didn't come back with anything.

I'm freaking out because I was sure that a clean EMG=No ALS, but now it looks as though my EMG was too early and I have abnormalities. Scared that I put my mind at ease too early.

Wondering, are there reasons why an EMG would be clean and then dirty a few months later that doesnt point to ALS as the culprit? The doc didn't have an answer for me there. I have no real weakness yet (as far as I can tell), just clumsiness in my right hand, cramping, fatigue and periodic stiffness/pain.

Thank guys, I'm hoping you can help calm me down and say what else it might be.

-Sean

 

[lgelb]

You don't mention abnormal motor units in terms of size or shape. If there weren't any, that leaves a wide field, in which ALS is still fairly low on the list.

 

[Atsugi]

Don't get ahead of your horses. Still not pinpointed on ALS.

Looks like he didn't thoroughly answer your questions. Doctors can be like that--a lot.

You have the right to get a copy of the summary report, and a copy of the actual EMG.

 

[Lkaibel]

It is very good news that you are going to the University of Minnesota now. They are considered one of the best ALS Centers in the country and possibly the world. Whatever they tell you, you can trust.

The big and central question with an EMG is, are they seeing signs of chronic and active denervation? The next concern is something called "short wave abnormalities". The presence of those things does not mean definitively that you have ALS.

If they feel the EMG and symptoms justify it, the U of M will do extensive bloodwork, MRI's, and if things look REALLY confusing a muscle biopsy (less likely, but it happens). Spinal taps use to be commonplace as part of the workup but I understand they are now out of style. If you have one, they honestly are not a huge deal anymore.

Take care, try to keep your head and remember the odds are in your favor that this is not ALS. Get that appointment as soon as possible. They can have a long wait but be patient, they are worth it. There is no where else I would go with neuro symptoms in this state.

 

[KimT]

I wouldn't get ahead of myself until the EMG was done at U of MN and interpreted by a neuromuscular specialist. They know exactly what to look for and, most likely, will do numerous other tests.

Hoping they find something treatable.

 

[Blurblurb]

Thanks for the positive thoughts guys, but its hard to stay optimistic with the anxiety of this. I'm worried that all of the pain that I have may just be spasticity and the tightness behind all of it.

I was so anxious that I called my regular neuro on Friday and asked him about the results (as it was his colleague who did the EMG). He told me that worrying is premature, it was just minor changes in my EMG, so we have to wait and see what happens on my next EMG. I asked if this is indicative of early ALS and he said "sometimes yes, but its so minor that it could be nothing right now." I asked him if I should be worried that there were changes at all and he said, "I don't think so, ALS is so rare. It was just that he put the needle in and it made a "tuck tuck" sound instead of a "cluck cluck sound" (I'm paraphrasing the sounds he made). I have no idea what that means, so not super reassuring. He was so short on the phone and I got the feeling that he was just telling me not to worry because he knows the anxiety I'm experiencing.

I'm trying to get the EMG report so maybe someone on here can help me understand it a bit more. My previous neuro already ran like 1000 blood tests, had a full MRI of my brain, cervical, thoracic and lumbar spine, and everything came back normal. No imbalances in any bloodwork and no nerve issues.

I'm just trying to focus on the positive stuff -- I don't think I have any weakness yet, I'm walking fine and my wife is supportive and wonderful. I just can't stop thinking about it... I'm trying not to test my reflexes and do all of the strength tests and just focus on doing things each day but I can't help but worry.

Thank you again for all of your help and support. I really appreciate it.

Sean

 

[Lkaibel]

We are with you Sean. It's so frightening to hear it even as a small possibility. I am rooting for you, and I think you just need to keep in mind that the odds are in your favor here.

The waiting sucks, but you will get through it. Try to think about anything but your health in the meantime and get some rest. The worry is stressful for sure.

 

[KimT]

Sean, Remember that brisk reflexes are very common. I've had them all my life and my neuro's are worse than mine.

 

[Blurblurb]

Okay, I think I removed the personal information now.

So here is my EMG. Can't help but read that conclusion and feel terrified. 4 months in and my right arm feels weak, is twitching way more than my left, and I have cramps and stiffness in all of my right side muscles (ribs, legs, back and arm).

Can someone help me understand this better?

Thank you to everyone. I really appreciate the support.

Sean

 

[Nikki J]

As Laurie mentioned above if there were no abnormal motor unit configurations ( there weren't) it puts more things on the table.

It would be very unusual for ALS to start up in 2 places simultaneously and IF these were ALS changes they must be incredibly early

It is very hard to wait when you are in limbo but hold on to the fact that it is still very likely to be not ALS. Sometimes these findings go away spontaneously

 

[lgelb]

Nikki is right -- the motor units remained normal, so the fact that your squeaky-clean EMGs were followed by one showing some twitchy muscles should not lead to panic. The truth is, no one can even run down all the possible causes for that since most people in your situation have not had 3 EMGs within as many months; you're asking about evidence of the unseen. The odds are still very much in your favor that this does not relate to any motor neuron disease.

Best,
Laurie

 

[Blurblurb]

The panic is setting in.

I've been told by a lot of people that Fibs don't necessarily mean als, but since my EMG - whether consciously or unconsciously - my entire right side is weak and sore and my right arm twitches are so much more noticeable.

I don't feel any in my left and the tricep spot where he said I had a fibrillation seems to twitch more (and subsequently terrifies me every time it happens) and has a burning sensation (it actually has been burning since feb). It doesn't help that my right arm is perceptibly smaller than my left.

I can't stop obsessing about it. Other than xanax (which is helping) is there anything more positive thoughts or impressions on my emg that you guys might be able to tell me that might make me obsess less or any mindful techniques I could use to take my mind off of it?

Thank you all so much. I so appreciate everyone here.

Sean

 

[Atsugi]

"I can't stop obsessing about it."

And there is the real problem.

 

[Blurblurb]

Mike, I'm just terrified. I can't stop thinking of my family. Are there any other times of people who have fibs and then it turned out to be nothing?

Sean

 

[Nikki J]

Yes. See Laurie's response and mine. I know another member kindly messaged you because it happened to him. I know it is difficult but you need to get a grip and find a way to get through the time to your follow up appointment.

All fibs are not ALS and you do not have the other things that are seen with ALS

I had an abnormal EMG 7 weeks after my first minimal symptom. It had all the ALS abnormalities in one muscle. The surrounding muscles had early abnormalities ( not fibs). Everywhere else was normal. Isolated fibs in 2 places just don't seem to go with ALS. It starts in one place and spreads from there.

I think worsening of symptoms suddenly after you have been told there is an abnormality is common. It happened to me and it was definitely in my head

If you can't deal, talk to your doctor. You have to find a way to get through the next months

Good luck