Concerned I am presenting with FALS

Darius

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I was told to keep people updated here, so that's what I'm doing. And I continue provide care to my mum to the utmost of my ability. I'll likely be consulting people here over the coming months as my care for her progresses.

I have three questions today that my relate to the test results that have come in from my EMG.

I've attached the typed report that was forwarded to me regarding the results the EMG. (It's just a written report - I wasn't sent the EMG data). Fasiculations were observed in various limbs, including abdomen. But no denervation was observed in any of the tested areas.

My neurologist said the hospital would like to keep tabs on me considering my history, which is logical. And on the phone said the locations of fasiculations 'are slightly atypical', and atrophy is observed, so would like to figure this out whatever it is. I'd like to have a clinical assessment as the neurologist has yet to have done one, so my reflexes have not been tested for any abnormalities. No date set for that. Perhaps you could give me your opinion.

Now the result has come back from EMG, I'm glad there's no denervation. Obviously just quite curious as to why I have atrophy, fasiculations and cramps.

1. Overall, is this what is considered a 'clean' EMG?

2. If so, is this EMG result categorically ruling MND out? I'm just wondering how I should go forward sensibly, is all; considering my family link to c9, and the neurologist agreeing on atrophy and fasiculations.

3. Lastly, I have genetic counselling planned. Could the symptoms I'm experiencing now take new meaning after the genetic test? I feel like I should just do it to get it over.

4. What does no active denervation mean/what is the difference between myopathic and neurogenic muscle wasting?

Best wishes.
 

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Nikki J

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No denervation means no ALS. Clean is not a medical term. It looks like a benign emg if that is what you mean

have you actually been examined in person by the neurologist and he detected weakness and atrophy? Last I heard after the initial video visit he felt bfs and only did the emg in an abundance of caution.

if you choose genetic testing the result is not going to diagnose you if it is positive. a negative result might mean that they would drop their super cautious follow up plan.
 

affected

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Great to see the EMG shows clearly that at this point in your life you don't have a single sign of ALS. None of us know what the future holds of course.
I hope you can be helped deal with decisions on testing by seeing the genetic counsellor. I also hope you are able to support your mum, she must be going through extra hell knowing you are chasing the diagnosis for yourself at the same time as she is going through the actual disease.

Your vague symptoms don't necessarily indicate anything serious or concerning, the more you concentrate on them, the bigger they loom in your day.
 

Darius

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Nikki, thanks.

Just to answer your questions.

I had a very brief video consultation 7 days before the EMG was done.

Neurologist told me to take off my shirt, and he saw atrophy in my right bicep and tricep. He asked me where I felt weakness and I told him in that arm. He also asked me if there were things I couldn't do, and some things I'm struggling to do that I never used to. I listed them. He suggested we do an EMG and the above result came in.

I have not been examined in person because the hospital isn't currently allowing people in to the neurology clinic. I was only allowed to do EMG as it was privately done.

When a date for a thorough, in-person clinical is set, hopefully he can clear things up and advise further.

To be clear about the symptoms there is widespread fasciculation and cramping (both right and left side), confirmed atrophy in right arm (and non-confirmed clinical weakness) in right arm. But without denervation present there's not much to discuss here, as you say. I know you have doubts about MND, so perhaps this is something else. I'm with you on, I'd much rather forget about this and focus on mum. I definitely won't be discussing my symptoms with her before any clarity has been provided.

I'll get back to you once I've seen the neurologist again.

Best wishes.
Darius
 
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affected

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Thanks for clarifying. The EMG is a tool used to help diagnose a huge range of diseases, not just ALS. So asking for an EMG is a reasonable thing as he is looking for any number of causes. ALS is one of the rare reasons for atrophy and weakness, so again he is looking for the cause, but that doesn't mean he is looking for ALS.
Twitching and cramping mean little and you can't have 'non-confirmed clinical weakness', but you can have feelings of being weak which may not be clinical weakness at all. What I mean is that clinical weakness is diagnosed by a doctor physically examining you, so you either are examined, and have this, or you don't. Once you can be examined that will be determined. You might be surprised at how many people swear they have terrible weakness, then are examined by a doctor and told that their strength is perfectly normal.

I hope you can get this sorted soon, I know it is frightening. It is still incredibly unlikely given your age. I have never heard of a parent and child developing ALS at the same time. But we often see the children of parents recently diagnosed, who fear they are also suffering the same thing.
 

Darius

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Hello,

Posting again to provide a thorough update, to provide a breakdown of what has happened since my last post, and tell you what the neurologist has said. I'll also leave a couple of questions below. If you could help me with them I'd appreciate it.

For recap sake, my family carries the c9 gene, my mother has MND and I began to get investigated myself after showing symptoms.
I am 27 and used to be a very active person.

Primary symptoms (since March 2020):
Widespread fasciculation. R arm atrophy (bicep, tricep, deltoid). R arm cramping. Failure to do the activities I was doing before, e.g my fitness regime, specifically in R arm.

Secondary symptoms:
Since mid June 2020, I've had debilitating pain stemming from my neck, which radiates down my arm and caused weakness and tingling. My doctor believes this to be Cervical Radiculopathy, which it likely is. So I am being treated for that separately with a physio and medication to treat possible c6 nerve injury.

Last neurological assessment:
In late June, I had an examination by a second neurologist at an MND clinic. He assessed me for my primary symptoms, I did not fail the strength test. Obviously, relieving to hear, relatively speaking. He mentioned I had no reflexes in my arms. And in regards to the secondary symptoms, he said he thought the nerve issue was likely what was causing the pain and tingling but that he'd like to further investigate why the atrophy and widespread fasciculation is happening.

He read the reports from the previous neurologist in May before I came to see him, and said "I've got to say, before I gave you a clinical, I thought I'd be giving you bad news today. But as of today, I won't be diagnosing MND". A comment I didn't really know what to make of but obviously it was positive news then and there.

He's referred me for an MRI and wants to do a further EMG.

Summary:
As of right now I'm not failing clinical strength tests. Good.

The atrophy and widespread fasciculation needs exploring, however. The next EMG will be helpful here. The first EMG showed fasciculation, in some areas like abdomen, legs, trapezium which my neurologist said was curious, as he doesn't usually see ab area twitching in BFS or benign hyper excitability - but there was no denervation seen in any limbs.

Questions for today:
Now that there's a possibility of Cervical Radiculopathy in my arm and neck, are there predictable things to look out for on the EMG in July that suggest some kind of nerve disease rather than MND?

If the widespread twitching is happening simultaneously to the CR, could they be linked?

Would it be wrong to assume CR is the cause of the atrophy?



Best.
Darius
 
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Nikki J

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You can see denervation in cervical radiculopathy often on emg. The pattern distribution and symptoms are used to differentiate it from ALS as well as other tests. Atrophy weakness and fasciculations certainly happen with both issues. Pain , numbness ,tingling and reduced /absent reflexes point away from ALS and toward radiculopathy

a radiculopathy does not usually cause symptoms beyond the affected area though myelopathy could. However as you know twitching is non specific. I have certainly seen people with bfs report twitching every conceivable place

let us know what the tests show
 
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