Very Scared

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Marta1985

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Very Scared

Goodnight everyone:
I have been with generalized fasciculations for three years, the first two emgs were clean (2017 and 2018), one I did it four months after the fasciculations began and another after eight months and both were normal, the last emg I did it in November last year and they explored many muscles (16 muscles on the left and 16 on the right), in the abductor hallucis that had not been explored before, a chronic neurogenic pattern with fasciculation and slight loss of motor unit unrelated to protrusion or hernia appeared. In the rest of the muscles all good.

Since I still have the same symptoms, I have
I have talked to the neurophysiologist and he has told me that sometimes the ela starts focally in a muscle and that in the EMG you can see a chronic neurogenic pattern with fasciculation before the weakness appears and that fibrillations or positive waves may not be seen but only that find is seen.

I have been very scared, especially because I am looking for pregnancy and I have stopped my plans because according to the words of the neurophysiologist I understand that it could be a beginning of it.

I would like to know if in a year after a dirty emg there should already be weakness or can it take years to appear?

I am afraid of repeating the emg, I do not know if without weakness they could diagnose me if there were more injuries or for the diagnosis we have to wait for weakness? I want to get pregnant but with what the neurophysiologist has told me, I am afraid to take the step and that I am developing a ela
 

Nikki J

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I think calling that a dirty emg is a stretch but yes you should have weakness. also the diagnosis of als requires abnormalities on clinical exam- upper motor neuron signs and clinical weakness. No one should be diagnosed only by emg- it is the whole picture. A diagnostic emg which you did not have , a clinical exam consistent with ALS and tests to rule out other causes of the Weakness and umn signs

I suggest returning to the doctor and discussing this- mostly because you are making life choices based on your fears
 

Marta1985

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Good night Nikki:

Thank you very much for your answer, I am very afraid because I think that the fasciculation that appeared in the abductor hallucis in the area of loss of motor unit is indicating the disconnection of the nerve and the muscle and that I was caught very early and will soon arrive weakness I feel discomfort in the arch of the foot, a lot of tension and I am convinced that something is happening

It's been eleven months since the last emg, if I was right, would there already be clinical weakness?
You tell me in your post that there must be weakness for me to be diagnosed, however the emg can detect changes before the weakness occurs (as could be my case); Does this mean that if the clinical exposure is normal, even though there are changes in the emg and there is a greater loss of motor unit and other signs, if it does not follow the clinic, it would have to continue waiting for the weakness to appear to be diagnosed?

What anguish, how long on average do fasciculations appear before weakness?
My family tells me that it has been three years since the fasciculations began and I should not worry so much but the change in the emg appeared eleven months ago and I have read some cases of people who had these symptoms for a long time before the weakness so I am convinced that the loss of motor unit is going to increase and the loss of strength is going to come.

One of the criteria of the ela in the emg is to find a chronic neurogenic pattern with fasciculation in the same area according to Awaji and I met it. I have many doubts about whether to perform another emg because the last one I did did not make anything clear and I has made you experience a lot of anxiety over those findings.

One last question two years ago that I suffocated when climbing the stairs, that I feel a strong pressure in my chest when I laugh and when I cry as if I had no air in my lungs to do it, these would also be symptoms of the disease?

Thank you very much from the heart
 

Nikki J

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Awaji is not any old fasciculation it is a specific type of waveform to be counted. And anyway ALS also calls for widespread issues. I can also tell you we see many people with isolated fibs or psws who also end up cleared. It is your choice whether to follow up or not. I am unclear about your breathing question whether it is ongoing or happened and went away. Either case though if you had the onset for respiratory issues two years ago you would be in very bad shape now. Anyway it doesn’t sound like ALS respiratory symptoms even if it just started.

fasciculations usually come after weakness or start about the same time

I suggest you stop googling and either work with your doctors or choose to wait.

please do not keep asking us to address the speculations of your anxious mind. I don’t think it matters what we say because you just keep googling for reasons to disbelieve our opinion. If you have more questions you need to see the doctor who is the right person to answer them
 

Marta1985

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Nikki I'm sorry that you think I'm ignoring them. I haven't read internet pages for a long time but when I spoke with the neurophysiologist and he told me that there are elas focally and you have to repeat the emg several times to see if there are changes (after finding a neurogenic pattern and fsciculations in the same place) I was very scared because I have seen cases on this page with emgs that have come out clean and then they have changed and it turned out to be her.

I recently read the update from Mike who had several clean emgs and this has reinforced my fear.

In my last emg there were changes in the muaps and I know they could be due to other injuries but it fascinates me all over my body as if I exploded popcorn, they are very annoying and do not stop for a single second all over my body (I feel them but weird I see them once), so I have been three years old and physically I have extreme fatigue, mainly in my legs.

When I did the first two emgs, nothing came out in any muscle because they had not punctured the muscle that was injured and that it was seen in the third emg, that makes me constantly question whether they left muscles without puncturing that they were affected or if they simply did not show yet. changes

For me it is being very complicated because I see that something is not going well in my body, I wanted to be a mother but every time I see myself closer to the diagnosis due to the symptoms and changes in the emg and I have made the decision not to get pregnant. I would have liked to talk about it with the neurologist, but the situation of the pandemic is complicating medical appointments in Spain and for a few months I will not be able to see the doctor. That is why I have contacted you to ask your opinion about my emg and obtain more information about the reasons behind a delay or misdiagnosis and how often several emgs are needed.
I heartily thank you for your attention.
A hug to all
 

Bestfriends14

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There are several Mikes on this site. Please post the link to the specific case for context. Regardless, your symptoms, as Nikki says, are not indicative of ALS.
 
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Marta1985

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I do not know how to copy the thread but the member of the group that has recently confirmed his diagnosis is Mike12345 (it is his last update) and in conversations with another member before the last update they told him that he had done 5 emg and they were clean so no the disease was suspected. How can I copy link?
 

Nikki J

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Don’t bother to copy. Mike was an unusual case for sure but in his first thread he had atrophy and also had said failure somewhere ( possibly in a profile message) at that time manifested by inability to walk on toes. Since we do not know how he was diagnosed all I can say is I advised him to keep working with his doctors as something was objectively wrong.

i believe your case to be different from his in many ways.

i haven’t been able to see my neuro either in person but there should be a way to speak or email. Zoom or phone?
again we answer as best we can but you need to work with your doctor. Most people are diagnosed by the neuromuscular specialists quickly once they get there. repeated negative or near normal emgs in people without clear upper motor neuron signs are very rarely followed by a positive emg after.

please do not continue to ask what about this person or that one. Nothing we say helps. Closing thread. Do not start another unless you have a diagnostic emg
 
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