EMG showed abnormalities

[Kosmoskatten]

I am a 37 year old female.

I have issues with lisping/slurred speech and slight swallowing difficulties. Tongue feels swollen. Lips are sometimes visibly swollen. I have been biting the inside of my mouth and my tongue occasionally.

No tongue weakness as i can see, I can still tent cheeks, move tongue around and touch the back of my mouth. No visible atrophy, however I notice lines on my tongue which has become more pronounced and become of larger number.

I also have weakness in right arm and right leg.

I have seen a neurologist and this week I finally had my EMG with the neurophysiologist unit.

Tongue EMG showed abnormalities, they put the needle under my chin in my tongue muscle and there was a constant buzz/constant spontaneous activity at about 20Hz. Arm and leg was normal.

I have not got my EMG back yet from my primary neurologist, and I am quite worried.

The doctor performing the test called in two other doctors whom all evaluated it. They seemed not to know what it was, more than it was abnormal!

I asked about ALS, and they said definately not, all three of them, but when I read about it, it says everywhere that spontaneous activity at a high frequency is indicative of ALS.

I don't know if I should really trust the doctors, I have got progressively worse and I still fear bulbar onset. I know that my primary physician will get back to me in due time, but I would like a second opinion from people who have been through this process.

 

[dalvin]

biting your tongue and cheeks could be cause of the swelling, as for the rest you'll have to trust your doctors as i for one have no idea how to read their test results

 

[blackbird]

If three doctors said, "Definitely not ALS" why wouldn't you trust them? With their education, experience and training, it's silly to think you'd be better at diagnosing ALS from something you read online.

I don't say that to be snarky - just to tell you to stop worrying about ALS - definitely not is about as certain as you can get, so that is WONDERFUL news. Hopefully they will be able to figure out what is causing your issues, but three doctors said it's definitely not ALS so yay!

 

[Kosmoskatten]

Thank you for your answers.

I think what has made me not trust doctors is that I have heard and read about so many bulbar ALS-patients being misdiagnosed or diagnosed way too late.

I will sit back and wait for my primary physician to get back to me and maybe give me a more thorough explanation on why ALS is outruled.

However, more input is always welcome.

 

[bluedog]

When you say "buzz/constant spontaneous activity," was it just a buzz or other types of noises too?

Did they say "spontaneous activity," or did you?

Spontaneous activity sounds are: fasiculations (loud popping sound), fibrillations (rain pattering against a tin roof sound), and sharp waves (I think they sound the same as fibrillations but not sure). Did you hear anything like that?

Fasics, fibs, and sharp waves also have an unmistakeable appearance on the graph. The neuros would easily recognize them, and they would know the sounds too. So it seems like the spontaneous activity in your exam wasn't what is typically looked for in ALS. They would have known what it was.

Or maybe with the tongue, buzzing means something that these particular neuros don't know about.

How long ago did you start having symptoms? If it is less than 4 months, you might want to get another EMG of your limbs in a few months to see if deinervation/reinvervation appears.

Do you have brisk knee reflexes?

 

[Kosmoskatten]

The examiner used the word "constant activity at rest", roughly translated. The examiner told me that my tongue muscle was moving all the time, eg never resting.

The sound was like a buzz or maybe you could describe it as the rain pattering against a roof. It was constant without any loud noises, and I do not think there were any sharp waves. ( Although I can't picture the sound of that )

I looked at the monitor, since he repeated the exam with the two consulting doctors, and the waves looked like my other muscles tested did when I was engaging them in activity, eg flexing or fanning my finger against the examiners hand.

I can't feel these movements at all and my tongue does not twitch when placed at rest in my mouth.

One of the doctors briefly mentioned that it could be some kind of dystonia, but on the other hand said that dystonia generally showed another pattern.

My symptoms have been ongoing and worsening since july.

I had a clinical exam in early september, and at that point I had brisk reflexes, but in a normal way. The only thing my primary physician wanted to test further was that I showed signs of not being able to relax my thenar muscle. However he said at that point that it might be normal and nothing showed on either EenG or EMG of the thenar area.

 

[Kosmoskatten]

I will also add a couple of symptoms which I did not include in my initial post;

- A on and off feeling of a lump in my throat which is what makes me feel like it is hard to swallow at times. I have not done a barium test yet.
- An increased feeling of lactic acid in my right arm; I have to stop when I blow dry my hair, wash my hair, brush my teeth. But as said, tests where normal in my right arm, and I have no prominent clinical weakness.
- The soles of my feet have a burning sensation. Like a trickle combined with a feeling of heat. I have tested for diabetes, since I know this can be an indicator.

 

[Kosmoskatten]

No further thoughts?

 

[Marcus44]

- The soles of my feet have a burning sensation. Like a trickle combined with a feeling of heat. I have tested for diabetes, since I know this can be an indicator.

This looks like peripheral neuropathy which some people on here will say rules out ALS but the more I read about this subject some people that have ALS also have peripheral neuropathy as a symptom. But with that being said peripheral neuropathy can be caused by many different illnesses. With Lymes and Diabetes being some of the main causes. (not saying you have either of these as I'm not even close to being a d o c to r.)

 

[JEB1979]

I was diagnosed with peripheral neuropathy by a doctor, then saw a neurologist who said that ALS is "a possibility," so having neuropathy definitely doesn't rule out ALS.

 

[Inventor]

Amyotrophic lateral sclerosis with sensory neuropathy: part of a multisystem disorder?

Amyotrophic lateral sclerosis with sensory neuropathy: part of a multisystem disorder?

Abstract

Sensory involvement is thought not to be a feature of amyotrophic lateral sclerosis (ALS). However, in the setting of a specialist motor neuron disease clinic, we have identified five patients with sporadic ALS and a sensory neuropathy for which an alternative cause could not be identified. In three individuals, sensory nerve biopsy was performed, demonstrating axonal loss without features of an alternative aetiology. These findings support the hypothesis that ALS is a multisystem neurodegenerative disorder that may occasionally include sensory neuropathy among its non‐motor features.

Still, it's too rare to warrant a worry at this stage. Many possible explanations.

 

[Kosmoskatten]

I have been examining possible other diagnoses, such as dystonia that was mentioned by my neurologist when I spoke to him this last friday. He does not think my EMG abnormalities fits the ALS pattern, rather something else, such as dystonia or possible Multiple Sclerosis. But it is yet too early to completely rule out Bulbar ALS.

My case will be featured on the monthly conference this thursday and I will then be admitted for further testing such as Cervical MRI, Lumbar Puncture and a more specific swallowing test. Should I ask for a second EMG? They did not test my tongue as in needling my tongue, they simply took a sample from underneath my chin.

Something I read about that caught my interest was that the Varicella virus (Chickenpox, Herpes Zoster type virus ) in rare cases can pose neurological issues after infection. I actually had chicken pox this spring, and since I am an adult, it was quite severe. I have not been vaccinated with Aclovir or other vaccine.

If I think back, symptoms started to creep up in late may, roughly three weeks after I recovered from Chickenpox.

Has anyone any experience from this, or heard anything about it? And more importantly, what can be done? Varicella is said to lie dormant in your system even after recovering from Chickenpox as a primary infection.

I will of course discuss this with my neurologist when he calls back this upcoming friday after having discussed my case with other specialists.

I do believe that neuropathy is possible in conjuction with ALS, but wouldn't neuropathy have shown on the EMG? Unfortunately my footsoles were not tested, and in the stress of the abnormality under my chin, I simply forgot to ask about this.

 

[Inventor]

I did not quite follow: did you have the EMG only in the bulbar region or also in the arm/leg that you feel weakened?

 

[Kosmoskatten]

I had an EMG in both arms and legs, trapezius region, hands, neck, jaw and temporals.

In my legs they tested both calves and thighs. Plus the infamous chin, where my tongue showed abnormalities.

They also did the EenG of the same regions, which was normal. No Eeng of the facial region apart from the jaw muscle.

However they did not test my feet in any way, which is where I have what indicates neuropathy. That is what I meant I forgot to ask for, or talk about.

 

[Inventor]

Having a normal EMG in the weakened limbs should in my understanding point quite strongly away from ALS. From my experience as a patient and by what I have heard from others, EMG should show the denervation way before it becomes clinically observable. In my first EMG, for example, I was found to have "large-scale widespread abnormalities in both upper limbs", although I had only noticed weakness in my left arm and hand.