Not so clean EMG

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Becca15

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I posted on here a while ago with my main symptoms been in my face, abdomen and breathing. I had 2 clean EMG’s but I have progressed with my symptoms.
They have ruled everything else out with MRI and blood tests.
I have wide spread spasticity. I also intermittent widespread twitching, especially in my back, ribs, face and abdomen.
I was doubted a lot on here and was told it was my anxiety which it clearly isn’t.
Here is a copy of my report.
They said there isn’t enough on there for a diagnosis of ALS at the moment and they cannot find any other reason for my symptoms.
This is not my anxiety.
Any advice would be welcome on here.
Over the past week my neck and shoulder muscles are stiff to the degree I’ve been unable to sleep. Most of the findings were in my face.
Wondering if this could be axial or bulbar onset. They cannot explain this.
 

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Previous thread here for reference:


Becca, were you provided a summary/conclusion with your emg?
 

Becca15

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EMG of the medial gastrocnemius shows occasional fasciculations but with normal motor units. The patient requested the EMG examination be performed on the facial muscles and the tongue. Interestingly, EMG of right upper part of the masseter showed some neurogenic changes with unstable units. Similar changes were seen in the right orbicularis oris muscle and I thought there were 1 or 2 positive sharp waves at some sites. EMG of left side of the tongue also shows some unstable units which will account for her concerning symptoms.

I am unable to find a clear explanation for the widespread twitching and cramps that she is suffering from. There is no strong suggestion of a peripheral nerve hyper excitability disorder either although I note that she is already on carbamazepine.

That’s it 😭
 

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I would be holding to "I am unable to find a clear explanation for the widespread twitching and cramps that she is suffering from."
 

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This still isn't worrisome for ALS per se, Becca -- though there is a hint of bulbar nerve damage. But to address your question, we would expect bulbar-onset ALS to present with significant EMG findings elsewhere, especially the second time around.

There are numerous nerve diseases and injuries that are more localized than ALS, and I would expect the team to monitor you and go through a diagnostic process. It is also still possible that the damage relates to something systemic like Lyme or another infectious disease, so I would be in touch with your GP as well.

Best,
Laurie
 

Becca15

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Thank you. I’ve had all of the above ruled out including lymes and autoimmune and infectious diseases.

Yet with no clear answers. My abdomen feels like it’s got a baby moving in it. My neck spasms are so bad that they are pressing on my nerves. I feel poorly and progressing. It’s a horrible situation to be in not knowing.
 

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You are on an agent to reduce abnormal nerve activity, but if it isn't working, I would talk about tapering off as there are other side effects. Were any other therapies like PT, massage, muscle relaxants, swimming, etc. suggested?
 

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What is their plan going forward? Are they having you follow up at an interval or are they referring you elsewhere? It is sometimes true in neurology that you just have to wait and then reassess. However, if they can’t articulate a plan for what they would be doing in 3 or 6 months maybe you need to go somewhere where they will be better able to explain your symptoms and findings. Is this current person a general neurologist?
 

Becca15

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Nothing suggested as yet as going to a lot on Thursday. Do you think this is ALS?

So would you all agree that’s it’s not my anxiety now? I felt really unsupported on here before and told to stop bothering terminally ill people when I clearly had concerning symptoms. I have appt Thursday to discuss the next steps.
 

Nikki J

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If your neurologist doesn’t know what this is having seen and examined you we certainly can’t. It doesn’t seem like ALS is the most likely answer but that is up to doctors to tell you. If yours isn’t up to it at your appointment then you need another opinion. Not all EMG changes are meaningful and the test is only as good as the examiners. We recently had someone whose emg was reported as floridly abnormal and consistent with ALS. A repeat with an ALS specialist was normal and they were told anxiety.
Let us know what happens Thursday
 

Becca15

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News to me that anxiety causes abnormal EMG. Where is that in the literature? Hope that person is ok and their neurologist sees sense to repeat it. Really hope they are ok.
Like you said the test is only as good as the examiner, I really hope the second and third one didn’t miss anything with this person. Like you said EMG changes are meaningful.
Don’t worry, I’ll keep you all posted. In the meantime, please all remember to be kind to people that are worried about their symptoms. Love to all facing this horrible disease.
 
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Nikki J

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My point with the anecdote was a more expert examiner found no abnormalities. The first EMG they had was wrong and we have seen this before. AlsoI said NOT all EMG changes are meaningful which is why even a well done EMG needs to be put into context with other clinical findings
 

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So were the EMG findings with this person in one area or multiple? Just curious. My symptoms are mainly in my face, trunk and neck area. I have lost so much muscle strength that I cannot push out stool anymore, my pelvis is twisted due to abdominal muscle loss (chiropractor), I cannot stand straight and I’ve had to have a catheter fitted yesterday. I find it hard to breathe when I lay down. I’m cramping in my ribs and abdomen if I cough or try to bend to pick something up. When they fit the catheter yesterday, they did various reflex tests, she said I had an abnormal reflex in my left foot too. She believed I have a neurogenic bladder but it’s up to neurology to deal with it. (U.K. healthcare) Tbh neurology have been a bag of crap. I’ve had to pay privately for my emg as I’m deteriorating and I requested Ed an EMG again from nhs neurology only to be denied it. I had to go private and hey presto , they’ve found a lot of issues (healthcare is different in the U.K.) But maybe it’s all in my head and I’m bothering terminally ill people. To be honest, I’m so upset with the reaction I first had when I asked for support in this group and I got passed off like it was all in my head. It’s clearly not. Will gladly keep you all posted.
 

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Nikki J

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Multiple areas. I suggest you talk to MND connect. They will speak with people who are worried about mnd and try to direct them to resources not just diagnosed. I am well acquainted with the NHS - in fact several of my relatives are nhs doctors and nurses. Like all systems it has its positives and negatives. there are brilliant neurologists in the system and awful ones and many in between. Same here. I have met neuros I wouldn’t wish on the most evil person alive
 

Becca15

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I’ve spoken to MND connect already. They advised me that clean EMG’s a few months ago means I don’t have it even when I told them I had progressive worrying symptoms. Three months after my last EMG, it’s showing issues. I’m honestly praying it’s something else but it’s hard to ignore my progressive symptoms when they’ve ruled everything else out. My family are also medical. My mum is an advanced nurse practitioner, my uncle a consultant and my sister in law a doctor. Many people at MND connect are not clinically trained. They are there for a listening ear. They also told me numbness and pain is also not a symptom. It’s WRONG. I’ve spoken to many people with this disease on FB groups about their experiences, many of which had 2 plus clean EMG’s prior to diagnosis (especially bulbar) and many who have also had a lot of pain and numbness too. This disease is different for everyone. I wonder how many people on here had clean EMG’s before diagnosis?!!I also wonder how many people were fobbed off as their symptoms been anxiety or another condition prior to diagnosis? I understand it’s a difficult disease to diagnose. However, when you cry out for help and get passed off when you are suffering is hurtful.
Love to all with this awful disease and I’ll keep you updated with developments.
 
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