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Marta1985

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Aug 9, 2020
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Learn about ALS
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11/2019
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Estepona
Hello again:
You told me to write when I went back to the neuromuscular and did emg, he did not want to repeat it because there is no objective weakness (for him) and he has told me that showing denervation in the abductor hallucis and fasciculation in that muscle is common because it is easily injured by weight, by bad support ... and that if there is any other finding in that area it would be misleading if there is no weakness.

He told me that it is true what the neurophysiologist said that there are focal and slow progressing lesions that can present fasciculations up to two years before developing weakness but they are atypical cases and that personally he has not seen anyone develop it after more than a year of fasciculations; I was so nervous that I don't know if he was referring to two years in the slow progression since denervation is seen in the emg or from the start of fasciculations without signs of denervation (it took two years to see that my denervation was in abductor hallucis because before They had punctured him) Could someone clarify what he meant?

On the other hand, he saw that my left heel was lifting less, but in that leg I have two nails inserted in the fibula and a plate in the tibia. I suffered an accident, they had to remove a quadriceps muscle and they removed 17 cm of skin in the year 2007 and he thinks that I cannot raise that heel much due to the aftermath of the accident but I know that before my fasciculation symptoms began I could do better and many months ago I realized that I cannot do it as well as before. That he is getting confused because of my accident and does not consider that it could be a weakness due to her, if this weakness were due to her, in how many months it is usually visible to a neurologist without confusion or for me to realize that the leg failure? Approximately since the summer I realized that I was raising that heel a little, would it have advanced since then or if it is a slow progression it could take a long time to produce a muscle failure?

Excuse the questions, I have waited for the neuromuscular visit to re-post as you asked but when I go to the doctor I get stuck and I could not resolve these doubts.

Thanks a lot
 
Past threads here:


 
There is an easy way to see if your heel weakness can be improved -- see if physical therapy helps. Sometimes scar tissue forms or gets more stiff years after surgery and physio can help with that. Or you might have been favoring that leg at a low level all the while and it might have therefore lost some muscle tone over time.

There is no reason here or with your neurologist to consider ALS. The two years notion is a red herring because you do not have other signs of ALS after three years of fasciculations as you describe them.
 
Thanks a lot!
I'm going to go to the physio, to see if I can work and improve the flexibility of that heel.They do not advise me to remove the plate or the screws, they inserted it from the meniscus 13 years ago and they tell me that the extraction can be very complicated
It is true that I have not exercised my muscles for a long time and my work is very sedentary, perhaps I have not taken care of myself enough and it is taking its toll over the years but when the neuromuscular confirmed that there were slow elas that took up to two years from the start fasciculations made me very nervous, I thought he was going to tell me a maximum of a year
Thank you very much, I will follow your advice to work the muscles with a physio in case there is low muscle tone that makes movement difficult.

A hug
 
Good afternoon:
I need help because between the neurologist and the neurophysiologist they have me totally confused, each one tells me something different and I am beginning to experience a lot of anxiety with their arguments

The neurologist does not want to repeat EMG, he says that based on the time (13 and a half months ago since the last EMG in which chronic denervation + fasciculation + slight loss of motor unit in abductor hallucis) and as there is no progression that is an indispensable condition for the diagnosis of als, although I tell him that I have random fasciculations all over my body and continuous in that calf and foot, being very annoying, he will not send any other test, he considers that in 13 months the weakness should be visible in the examination clinic.

The neurophysiologist says that there are focal lesions of slow progression and that it takes years for the weakness to appear after denervation, that as I continue experiencing symptoms we could do another emg and see if there are more lesions in other areas now that a year has passed but that it needs the neurologist's flyer (and the neurologist won't give it to me).

What the neurophysiologist tells me makes me jump all the alarms.
Could there be more areas affected by emg in that territory that you did not explore and that could be affected? the als has a generalized pattern of active and chronic denervation, I know that but is it possible that it will not puncture those other adjacent affected muscles?

The neurologist told me that there is no way to differentiate between benign and malignant fasciculation if they are in the denervation zone, if I have a loss of motor unit in the chronic denervation zone, how can he be sure that this fasciculation is not malignant and there is no weakness in that muscle because I haven't gotten to that seventy percent lost motor unit yet?

Who is right the neurologist who says that in 13 months there would be clinical affectation even if it were a slow-evolving als or the neurophysiologist who speaks of slow-evolving ones that can take years to reach weakness after denervation? May the lesion have started focally ?

I need to know your answers to decide whether to change the neurologist who asks me for the test if it is the neurophysiologist who is correct. You have seen in this forum people who have taken years to develop weakness after appearing denervation with fasciculation in the emg or after this finding the weakness came fast even being slow evolution and then it slowed down?

Thank you very much for your help, I am very distressed that two professionals have different criteria for the same situation.

Thank you very much for.
Marta
 
The neurophysiologist sounds like s/he is repeating a textbook by saying, "There can be cases" in the abstract, but not talking about your case specifically. It is like saying, "You can be hit by a truck tomorrow" -- true, but shouldn't change how you live your life.

The neurologist is correct that there should be no reason to worry with the lack of progression and the EMGs you have had since 2017.

As for what we have seen here, I can't think of anyone three years after essentially clean EMGs and a mechanical reason for focal stiffness who developed clinical ALS.
 
Hello everyone:
I would like to ask everyone a question about some of the things you write here and about something that the neurophysiologist explained to me and I don't think I understood it well.
You explain in your post that the findings in the emg are usually generalized in the ela, however there are elas as explained by the neurophysiologist that begin focally and affect only the extremities (in this I am not sure but I think he said in a pseudopolyneuritic way , correct me if that is not what it is called) With what he explained to me, many doubts arose.

When this focal form of ela occurs, the lesions in the emg would only be seen in an affected muscle (for example, in a muscle of the foot that is that end of the limb and from there they would extend upwards? Or does it refer to different muscles from the same leg to the foot? Ultimately my question is, is focal by a limb (for example the whole leg) or a single muscle then?


Is that the neurologist gave me an example in which he said that the signal comes from the spinal cord, therefore, there would have to be involvement of the entire path (different affected nerves and muscles) since the signal would be interrupted from above and that I understood very well but the neurophysiologist told me that the signal could be interrupted distally and then ascend towards other muscles (and I did not understand that well because it is contrary to what the neurologist explained)

On the other hand, if there may be a focal involvement, why do they sometimes only explore one side of the body? Do the muscles on both sides share nerve roots?

And finally, have you ever put in this forum that if they do the emg in a symptomatic place and there is nothing, it is not necessary to test all the muscles. In my case I feel generalized fasciculations that are almost never seen but are very annoying, they pricked me 32 muscles of which only one saw fasciculations + chronic denervation + loss of motor unit)
My question is: in ela fasciculation can be the hyper-excitability of the motor neuron prior to the disconnection of the nerve and the muscle without there being changes in the emg even if the person feels them or whenever they feel them should be reflected in the emg because the muscle Is she dying? Can one have a focal ela (feet) and experience fasciculations throughout the body?
Forgive my questions, it is that the contradictions between the neurologist and the neurophysiologist have made me have many doubts and, far from reassuring me, they have distressed me by the doubts that their different explanations have generated in me. I turn to you because you can clarify these doubts and I will be able to stay calm when you can clarify all these doubts that your opinions have caused me.

*Thank you Laurie for your previous answer!
 
Good afternoon

I would like to ask you a question, in January of last month I performed a podogram because I saw that the arch of the foot was deformed and was different from the left (the abductor hallucis that passes through that area is the muscle that left me with chronic denervation, loss of motor unit and fasciculation in the last emg carried out in November 2019), I feel tension and discomfort in that area of the foot and in the tendon. In the podogram the deformity in the right foot is perfectly seen, the diagnosis is pes cavus varus , more accentuated the arch of the right foot.
I know that cavus varus feet are present in some neurological problems and I would like to know if it can be a form of presentation in the ela taking into account the findings of my emg.
According to my physiotherapist there is no loss of strength and she does not perceive atrophy but my fear is that there is a subtle weakness or a subclinical atrophy that is modifying the footprint.

I have a continuous jerk or fasciculation (I don't know how to define it because I can't see it) that runs through the nerve of my leg every few seconds and a pinch-like fasciculation in the arch of the foot, in the rest of the body Random but different from the right leg. I sometimes feel a kind of burning in my thigh.

The neuromuscular does not want to repeat EMG without weakness because he says that other lesions may appear that give rise to confusion with my findings and he prefers to wait for the evolution He told me that to rule out other neurological pathologies we could do an MRI on the leg and see if there are changes in the muscles because that way we could know if an entrapment or even certain neurodegenerative pathologies was occurring but I have a steel plate in my leg due to a run over in 2007 and the radiologists say that I cannot do the MRI because the magnet itself The machine could tear off the plaque or cause serious burns on my legs. I am in medical limbo, but if I do not have these tests, I cannot rule out other pathologies.

I know that many times you say in this forum that chronic denervation must be accompanied by acute, that fasciculations if they appear first in a short time there is weakness but I cannot get the words of the neurophysiologist saying that a fasciculation in a zone of chronic denervation was used As a criterion in the diagnosis of ela and I have seen people who have initially had clean or almost clean emgs and if they repeat them they had many more findings that pointed towards ela, my fear is that there would not be a good examination and there would be more injuries in muscles not explored or that there are now more muscles affected.

It has distressed me a lot to see that the foot deformity is in the same area of injury of the emg. Do you think that an ultrasound on the leg and foot could give information and show changes if it is an ela as an alternative to the MRI that I cannot do?

Thank you very much to all
 

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May I ask why you are coming to a site to ask questions from members that are dying of ALS and their caregivers? You know full well you do not have this disease, so you should be bringing up all general health questions to your doctor and heeding his/her advice for next steps. Your answers on bone issues in your feet are not here. ALS is a disease of the brain, not bones.

Good luck to you. I hope you can let this unhealthy fascination with this site, and with ALS, go. If you need help with this, there are always counselors that can do zoom calls.

Take good care.
 
It is not the bone, it is the muscle that has been deformed.
My intention is not to bother but to clarify doubts.
I do not know if it is her or not because the neuromuscular without mentioning her has said that the foot can be neurodegenerative when combined with the findings of the emg.
I have asked because I do not know if it is among the neurogenerative causes and it generally begins in extremes.
The neurologist has ruled out an anxiety problem and said that it is neurological and must be named.
I have asked about the ultrasound because I have read studies in which I said that it was useful to see the changes, however the neuromuscular does not have much faith in that test to see changes of that type and I thought that they could clarify me about that test.
With all due respect, there are people who are also having a very bad time without a diagnosis but with a range of possibilities on the table. No one enters here for pleasure. I cannot even imagine their suffering but I do not think that it justifies speaking badly to other people who They are looking for a diagnosis and find help in a section in this forum.
I wish I didn't have to be here and they hadn't changed my diagnosis of benign fasciculations to another diagnosis.
Sorry for the inconvenience
 
pes cavus is not associated with ALS. the first neuro thing one would think would be Charcot Marie Tooth. It can also be idiopathic- no discernible cause

the fasciculation potential criteria are one set of diagnostic criteria refer to a specific type of fp and it is only one component of the criteria. Your emg report gives no indication that you should be worrying about this.

I think ultrasound is still experimental at this stage
 
Thanks Nikki, I was hopeful about the ultrasound not being able to do the MRI.
I spoke with the neuromuscular and informed him about the problem and he said very convinced the ultrasound was better than nothing, but without much confidence in the results.
So if you have it from the first emg that makes you denervations are generalized in the same area or there may be signs in a muscle focally and when repeating later emg have spread to other areas, I know that there are people who when my findings come out send to repeat the emg after months, with me and they did not do it and they classified it as benign fasciculations based on having a year without progression since the denervation appeared but when they saw my podogram and they told me that the problem may have a neurological or neurodegenerative basis there is that keep looking have scared me a lot.

Thanks for your time
 
You said it yourself -- 32 muscles tested, fascics in one, no acute denervation, 3y of fascics/testing, and you have no functional impairment or loss of strength on clinical testing. I'm interested that a neurologist thinks s/he can rule out anxiety, but that's not an excuse for not exploring all avenues. You're obviously in distress and these are stressful times.

I don't understand why you are so worried about the podogram. It's a test for flat feet, not neurological disorders. I can understand that not everything is down to your accident, but did you try physio as you said you would in December? This is a localized issue and you are worried about a systemic explanation seemingly just because someone said it's possible, as are an infinite number of low-probability things.

There is no point in discussing ALS further, with or without factoring the accident into your current presentation. The ultrasound appears to be your choice.
 
Hi Laurie,
First of all, once again thank you for your time.
When doing the translation of the message, I think that I have not understood well some things that you have written to me in your message.

What do you mean by exploring all the avenues? She said verbatim that it could be a neuropathy caused by the accident and that over the years sequelae are occurring in the form of nervous traps but like me
He perceived generalized fasciculations and not only localized in that area and the cavus varus foot is produced in different neuromuscular disorders.

He explains to me that in neurodegenerative diseases changes in the muscles are observed on many occasions, but I cannot do it because of the plaque and that has me very worried.

My concern has increased because it has gone from a diagnosis of benign fasciculation to a probable neuromuscular problem and knowing that the jerks such as palpitations do not stop in the leg and foot where chronic denervation, fasciculation and loss of motor appeared along with other fasciculations in the chest and tongue (which was not seen in emg but that they give me every day) make me think that one of the neuromuscular problems he has on the table is ela.

While it is true that there is no objective weakness, there is a lot of muscle fatigue and tiredness, which is also a form of presentation, right? I fear that there has been a progression in the emg and that by not having done any follow-up they have not seen if there is an expansion in other areas; the neuromuscular completely rules out an electromyogram without weakness because it says it can be misleading if we find changes by some other process.

I asked him if the fasciculations were presented with complex waves in the zone of chronic denervation in the ela when we discussed the Awaji criteria and he told me that there is no way to differentiate between benign and malignant fasciculations, which left me even more concerned because according to his words I understood that my findings could be the beginning of a slow focal ela that takes longer to show weakness. 15 months ago from the last emg, although it was a slow progression ela after that time, would the weakness be seen?

I want to think that it is happening to me for another cause other than an ela but when I think of all the findings in the same muscle in the emg in one area, the generalized fasciculations, the neuromuscular words saying that it may be a neuromuscular disorder and The MRI could see changes in the muscles if it is neurodegenerative and my fatigue and muscle fatigue I do not find many other possible diagnoses.

I have been doing physiotherapy since January, according to the physiotherapist there is no spasticity or loss of strength but I do not find much improvement in the discomfort and stiffness of the foot, I will continue with the physiotherapy and the exercise table that has marked me. They have informed us that there is a resonance machine in which only one limb is inserted and although you cannot see the entire leg, they can see the knee and foot so I will do that test together with the ultrasound to see if we can get something more clear and they arrive definitely a diagnosis.

Thank for all
 
Hello everyone:
The neuromuscular has given me a very big scare and I ask you to help me understand my situation because I do not understand anything.
We have spoken by video call to follow up, nothing has changed since we made the first visit and he saw my emg for 2019 and told me that normally in ela there are signs in a fuzzy pattern and not just in a single root.
In January I had a podogram in which a problem in the plantar arch was seen as I already told you and he told me that we could do an MRI on the legs and feet to see if there were signal changes in the muscle where I had chronic denervation, fasciculation and loss of motor unit; I could not do the whole leg because I have a steel plate on the opposite leg and it produces artifact so it distorts the image but we found a resonance in which I could only put one limb and it could only be done on the foot; In the MRI everything was normal, I sent the results by email to the neuromuscular who was optimistic since he said that if there was an acute denervation in the place after 16 months from the last emg we would see changes in the emg such as a fatty infiltration in the muscle by What I was very happy and calmer, also thinking about what you had told me that fasciculation usually comes after weakness and when denervation is seen before in the emg, weakness appears in a short time but two days ago I had the video call with him and I'm scared.

When I asked him if for the time he had been with denervation since that last emg (16 months) and after three years and seven months with fasciculations plus the results of the last test, we could rule out ela, he told me that there is no set time to rule out the disease while there are fasciculations and those findings in my emg, although they have been focal, says that he agrees with the neurophysiologist that there are those that are limited to a single area for years and have a slow evolution so I had to observe my evolution myself and to think that every month that passed I was away from the diagnosis but he could not tell me that time was a variable for discarding and he does not want to do another emg dino there is weakness

The first time he told me not to worry, that he had not punctured my abductor hallucis but there was another affectation because it is misleading since it is a muscle that is frequently injured and this time he tells me that this muscle could only be injured before that weakness appears and that there is also no time to rule out the disease.

I thought that one of the conditions of the ela was that there was a progress over time and if it did not evolve they thought of other diagnoses, but can a person have fasciculations for years, start injuries in a distal muscle and take years for weakness to occur? ?

He told me that normally the root of a nerve is affected in different areas and generally when the muscle is affected at the distal level there are also other contiguous ones affected.

From the beginning of an ela there are different roots affected or can there be only one in a very specific area without the root being affected from above? I had affected the s1 in the area of the abductor hallucis, they also explored the gastrocemius, and the digitum min extensor. that belong to the same root but those muscles were fine.

Generalized fasciculations can be irritability of the axons before reaching denervation and that the fasciculation is only seen focally in an injured area although you feel them everywhere?

He has given me a follow-up every three months and I don't understand why this follow-up now and the first time he did not give importance to the findings of the emg when he saw that there was only one affected root.

I thank you very much for helping me because the neuromuscular has left me in a situation of great uncertainty, I thought that time was in my favor and I was wrong
 
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