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Not convinced about my EMG results

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ryli

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Hello, I want to say thanks in advance for any input on my situation and any help you can provide. I'll try to keep it brief enough.

2.5 years ago, muscle fatigue with perceived weakness and fasciculations in right calf that I could not see.

First NCV EMG came back with Peripheral Neuropathy. Symptoms continued and cramping started.

Second NCV EMG came back abnormal. Fibrilations and fasciculaitons at rest in left abductor hallucis and left tensor fascia lata, fibrillations at rest. Left soleus fasciculation at rest. Peroneal motor nerve conduction velocity is slowed bilaterally. Right posterior tibial motor nerve conduction is mildly slowed.

My family doctor sent me to an ALS specialist in 2017 who diagnosed benign cramp fasciculation syndrome, fasciculations seen in right calf.

July 2018 - strong very visible fasciculations in both calves, bad cramping in calves and hamstrings, random fasciculations in shoulder bicep hip buttock, clumsy hands, dropping things, balance is off, tripping sometimes. Many CK tests 6 or 7 with raised levels in the upper 200 or 345 at highest.

March 2019 - saw neuromuscular specialist. All sensory responses normal. EMG of right proximal and distal leg includes muscles spanning the L2- S1 myotones have tall amplitude, long duration MUAP in right Tibialis Anterior. Mild Chronic Neurogenic changes at the L5 Nerve Root. My fasciculations are non stop 24/7 in calves and feet on both legs and I'm noticing more random twitching in upper body but not steady.

Any ideas what this could mean?
 

ryli

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Addendum to above post:

March 2019 - saw neuromuscular specialist. Clinical study showed reduced strength in right calf (which he told me at the time) then said it was normal in his report.

I have read that if you are given a diagnosis of Benign Cramp Fasciculation Syndrome, that becomes void if you have an EMG that shows chronic neurogenic changes.

Any ideas what this could mean? i think it might be the beginnings of ALS.

I forgot to mention that I am a 54 years old female, I am on 300 mg Mexilitine daily for Cramps, Also zoloft, lorazepam and zopiclone.

Thanks everyone :)
 
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KarenNWendyn

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You’ve mentioned fatigue, perceived weakness and lots of twitching. But is there anything you can no longer do? Muscle function failure is the hallmark of ALS, and without it, one would be hard pressed to conclude you have ALS. 2.5 years of symptoms is a long enough period of time that even a slowly progressing case of ALS would be expected to manifest some muscle function failure. Examples might include inability to rise up on your toes or heels, inability to fasten a button or open a ziplock bag, when you could do those activities previously.

Many people have abnormalities on their EMGs but do not have ALS. With ALS, abnormalities tend to be widespread, even in asymptotic muscles. It would be helpful to us if you could post your EMG along with the summary and conclusions, blacking out identifying information.
 

lgelb

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You are implying that an abnormal EMG negates a diagnosis of BFS. But it doesn't. "Mild neurogenic changes" can be a label applied to everything from mild diabetic neuropathy to carpal tunnel issues to old injuries, and so much more.

You're on a sleep aid, a sedative, an antidepressant and an antiarrhythmic used off label for cramps. To say that this combination can contribute to feeling unwell is an understatement. I would suggest that you find a good internist to re-evaluate your meds and the reasons for them.

Best,
Laurie
 

ryli

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You’ve mentioned fatigue, perceived weakness and lots of twitching. But is there anything you can no longer do? Muscle function failure is the hallmark of ALS, and without it, one would be hard pressed to conclude you have ALS. 2.5 years of symptoms is a long enough period of time that even a slowly progressing case of ALS would be expected to manifest some muscle function failure. Examples might include inability to rise up on your toes or heels, inability to fasten a button or open a ziplock bag, when you could do those activities previously.

Many people have abnormalities on their EMGs but do not have ALS. With ALS, abnormalities tend to be widespread, even in asymptotic muscles. It would be helpful to us if you could post your EMG along with the summary and conclusions, blacking out identifying information.
Physically for example, I am having weakness in my arms when raising above my head.. to do my hair, I have to stop and wait and try again. My calves and thighs feel like giving out if I try to walk up an incline.. at my building where I live. I am still do these things but I see a decline in my functionality especially clumsy with my hands.
I’ve read that they cannot day with any certainty that BCFS is benign for at least 4-5 years. Can you comment on the high CK counts? It’s not from exercise because I can’t exercise and haven’t for years..
Thank you
 

ryli

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You are implying that an abnormal EMG negates a diagnosis of BFS. But it doesn't. "Mild neurogenic changes" can be a label applied to everything from mild diabetic neuropathy to carpal tunnel issues to old injuries, and so much more.

You're on a sleep aid, a sedative, an antidepressant and an antiarrhythmic used off label for cramps. To say that this combination can contribute to feeling unwell is an understatement. I would suggest that you find a good internist to re-evaluate your meds and the reasons for them.

Best,
Laurie
I have read many articles about cramp fasciculation syndrome and there are many studies that indicate if your EMG has abnormalities then it’s no longer Benign. I’m not saying that means ALS but it’s something that changes the syndrome from Benign. The MUAP with tall amplitude and long duration worries me with the repeated high CK. He gave me a provisional diagnosis. Have to repeat emg in 6 months.
I’ve been on the smallest dose of sleep aid for 17 years, the Ativan is as needed, the Zoloft I only started 2 months ago and the Mexilitine last week to try to help the painful cramps.
I have cramps and fascis. 24/7 that have worsened and got stronger with a clinical weak right leg and the emg plus raised CK..
 

KarenNWendyn

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Physically for example, I am having weakness in my arms when raising above my head.. to do my hair, I have to stop and wait and try again. My calves and thighs feel like giving out if I try to walk up an incline.. at my building where I live. I am still do these things but I see a decline in my functionality especially clumsy with my hands.
I’ve read that they cannot day with any certainty that BCFS is benign for at least 4-5 years. Can you comment on the high CK counts? It’s not from exercise because I can’t exercise and haven’t for years..
What did the neuromuscular specialist say about your complaints of difficulty elevating arms above your head, and hand function complaints? If strength was normal on exam, that would be reassuring. I know you said he told you one calf was weak, but that could go along with the peripheral neuropathy. Also, has anyone examined your joints and checked tests for inflammation (ESR and CRP)? At some point you may want to see a rheumatologist.

Regarding CK, you said “Many CK tests 6 or 7 with raised levels in the upper 200 or 345 at highest.”.
Those levels aren’t that high. The normal range for CK is very broad, and many people walk around with values of 400-500, which is normal for them. For example, African Americans tend to have a higher “normal range” for CK. Certain medications can affect it also, as well as hypothyroidism.
 

KarenNWendyn

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I have read many articles about cramp fasciculation syndrome and there are many studies that indicate if your EMG has abnormalities then it’s no longer Benign. I’m not saying that means ALS but it’s something that changes the syndrome from Benign. The MUAP with tall amplitude and long duration worries me with the repeated high CK. He gave me a provisional diagnosis. Have to repeat emg in 6 months.
I’ve been on the smallest dose of sleep aid for 17 years, the Ativan is as needed, the Zoloft I only started 2 months ago and the Mexilitine last week to try to help the painful cramps.
I have cramps and fascis. 24/7 that have worsened and got stronger with a clinical weak right leg and the emg plus raised CK..
I feel that you’re trying to build your own case for having ALS and not believing the neuromuscular specialist. I would believe them or seek an opinion from another neuromuscular specialist.
 

Clearwater AL

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Ryli, I noticed you wrote, "He gave me a provisional diagnosis."

Maybe I missed it. What was the provisional diagnosis?
 

ryli

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I feel that you’re trying to build your own case for having ALS and not believing the neuromuscular specialist. I would believe them or seek an opinion from another neuromuscular
Ryli, I noticed you wrote, "He gave me a provisional diagnosis."

Maybe I missed it. What was the provisional diagnosis?
It is cramp fasciculation syndrome.
 

lgelb

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My point about BFS (or anything else) is that you can have it and still have something else mildly abnormal going on with your nervous system. Most people have more than one "diagnosis" that can be applied. By persuading yourself that the BFS is at issue, you seem to be increasing your own anxiety.

By the way, sedating drugs have more of an impact as you age and with long-term use. 17y is a long time for a sleep aid (and those types of drugs are increasingly linked with the development of dementia). So it is worth exploring the options for drug-free sleep.
 

ryli

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I feel that you’re trying to build your own case for having ALS and not believing the neuromuscular specialist. I would believe them or seek an opinion from another neuromuscular specialist.
Hello, Thanks for your input. I hope I cannot build a case for ALS but I am worried about the things I am finding out. I was hoping that someone on here had similar issues and could suggest something that they did or a test that they had that I haven't had yet. Maybe I am reading too much on the internet but I'm just searching for something that will give me peace of mind or tell me that I should be asking for more tests. I do believe the specialist but he did leave out the weakness and he was incorrect on my CK results. The reason I am mentioning the CK is because the way he worded his report sounded like it was a good thing that I only had one test with raised results. It is worrisome that whatever I have is progressing. He did do a test for Voltage Gated Potassium Channels in case it is Isaac's Syndrome.
 

ryli

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My point about BFS (or anything else) is that you can have it and still have something else mildly abnormal going on with your nervous system. Most people have more than one "diagnosis" that can be applied. By persuading yourself that the BFS is at issue, you seem to be increasing your own anxiety.

By the way, sedating drugs have more of an impact as you age and with long-term use. 17y is a long time for a sleep aid (and those types of drugs are increasingly linked with the development of dementia). So it is worth exploring the options for drug-free sleep.
Yes it's true the more I read the more it does produce anxiety. If you have experienced sleeping pills then you know it's almost impossible to get off of them. I have tried many times. I started taking them because I worked 12 hour night shifts in a stressful occupation. I couldn't fall asleep during the day when I got home at 8 am so I didn't have much choice.

Im not sure what you mean by persuading myself that BFS is at issue though?
 

lgelb

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"At issue," as in "called into question."

In other words, it's not whether you have BFS vs. whether you have risk for ALS or something else serious. There's thousands of conditions in between, that cause EMG blips, that should not really affect your life.

Night shifts are not the best for sleep, stress, anxiety, etc., either. Not clear if you are still working nights but a good counselor can help you get off the sleep aids by substituting different methods for falling asleep, if you want to.
 

ryli

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What did the neuromuscular specialist say about your complaints of difficulty elevating arms above your head, and hand function complaints? If strength was normal on exam, that would be reassuring. I know you said he told you one calf was weak, but that could go along with the peripheral neuropathy. Also, has anyone examined your joints and checked tests for inflammation (ESR and CRP)? At some point you may want to see a rheumatologist.

Regarding CK, you said “Many CK tests 6 or 7 with raised levels in the upper 200 or 345 at highest.”.
Those levels aren’t that high. The normal range for CK is very broad, and many people walk around with values of 400-500, which is normal for them. For example, African Americans tend to have a higher “normal range” for CK. Certain medications can affect it also, as well as hypothyroidism.
I didn't think to mention my problem with my arms above my head and I didn't think much about dropping things out of my hands, until looking into my symptoms more. I didn't know that was an issue. My focus was on my legs with the twitching and cramping and weak feeling and sensations.

I have had ESR done and it was normal. I had one CRP done and it was 55 which was re tested again later and then was normal.

I think my CK is a clue because i have exercise intolerance and muscle fatigue and possible atrophy so I am worried about that. I had normal thyroid tests. I started to be concerned when I read that CK counts in early ALS are usually raised but mildly, not extreme numbers. Whether or not it is related I don't know but I am having muscle problems in my right calf and that was the side with the abnormal MUAP.
 
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