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elb5003

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Hello everyone,

I have been reading and researching on the forum here for a few weeks now. I know you guys get a lot of these types of questions, but as you can imagine this whole process has been devastating for my family. So here is the situation......

My dad has been having muscle twitching in his legs (thighs and calfs) for somewhere right around 1 year. The twitches appear to be worse when he is at rest, especially when he is trying to go to sleep. He has no muscle weakness what so ever. His primary care doctor didn't think anything of it for months, but since it was not going away he suggested he go to a neurologist. My dad went to the neurologist and his assistant preformed an EMG on him. The EMG came back abnormal. He is showing muscle Fasciculation's in his legs and arms (he rarely ever feels it in his arms). They also preformed an MRI and multiple blood tests. Both the MRI's and blood tests came back fine. The neurologist he went to does not specialize in neuro muscular diseases so he referred the tests to be read by a doctor in the same facility that does specialize in neuro muscular diseases. Today he went to get his diagnosis from the specialty neurologist.......

The doctor did not take any time at all to ask my Dad any questions about his situation. The whole time my dad was at this "highly regarded facility" he felt extremely un comfortable. He was cold and the first question he asked is "why are you here?" Ummmm well I think the answer to that question is pretty clear. He told him that because the MRI and blood tests came back clean he suspects my dad is showing the beginning signs of ALS. He is basing this diagnosis off of one EMG test. Is it possible to make a diagnosis of ALS with just this little amount of information? Like i stated earlier he is showing no signs of muscle weakness at all. He goes to the gym 5 days a week and does at least 45 minutes of cardio every time. I'm not the best at explaining in words. I am a much better talker, so if you need any additional information please ask me, because I know I may not have explained everything clearly. I am extremely upset and any insight would be greatly appreciated.

Thank you so much!
-Eric
 

elb5003

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Something else that I wanted to add is that he is showing no other symptoms of ALS. The only symptom is the twitching of his muscles for the last year.
 

Dusty7

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Eric,
From Criteria For the Diagnosis of ALS - The ALS Association

"The diagnoses of ALS requires the presence of
1. Signs of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
2. Signs of upper motor neuron (UMN) degeneration by clinical examination, and
3. Progressive spread of signs within a region or to other regions, together with the absence of:
o Electrophysiological evidence of other disease processes that might explain the signs of LMN and/or UMN degenerations; and
o Neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs."

Well, it sounds like there was no clinical exam, so no finding of UMN signs.
And there can’t be signs of progression based on one EMG.

Now, he may have ALS, but in my not-a-doctor opinion, you’re a long way from it. As we have discussed on this forum, some doctors like to say ALS right away o get it on the table. Others won’t say it until theyr’re about 120% sure.

Second opinion from a different facility, anyone?
 

elb5003

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Eric,
From Criteria For the Diagnosis of ALS - The ALS Association

"The diagnoses of ALS requires the presence of
1. Signs of lower motor neuron (LMN) degeneration by clinical, electrophysiological or neuropathologic examination,
2. Signs of upper motor neuron (UMN) degeneration by clinical examination, and
3. Progressive spread of signs within a region or to other regions, together with the absence of:
o Electrophysiological evidence of other disease processes that might explain the signs of LMN and/or UMN degenerations; and
o Neuroimaging evidence of other disease processes that might explain the observed clinical and electrophysiological signs."

Well, it sounds like there was no clinical exam, so no finding of UMN signs.
And there can’t be signs of progression based on one EMG.

Now, he may have ALS, but in my not-a-doctor opinion, you’re a long way from it. As we have discussed on this forum, some doctors like to say ALS right away o get it on the table. Others won’t say it until theyr’re about 120% sure.

Second opinion from a different facility, anyone?
Thank you for your insight. He is going to get a second opinion at the University Of Miami. They have a clinic specializing in ALS. The original neurologist also did a strength test on him. He had good strength. They said that his right side was slightly weaker than his left. But he is a lefty, so I thought that would be pretty natural. Maybe I'm wrong? This "specialty neurologist" did no physical examination on my Dad. The first time he came in contact with him was when he was giving him his diagnosis. He was very fast in throwing out an ALS diagnosis, and I just don't feel he did enough leg work to really give a proper diagnosis. What is the purpose of a doctor throwing out ALS right away? What benefit can that have? Wouldn't there be muscle weakness after a year of fasciculations?
 

elb5003

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Sorry the doctor said the fasciculations were in multiple areas. He did not specifically mention the torso or the brain. Is it possible to have fasciculations in multiple places and no ALS?
 

elb5003

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I also responded with a long post and it said it had to have a moderator read it first? maybe because i quoted you?
 

bluedog

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People with Benign Fasciculation Syndrome have twitching in multiple places and do not have ALS. Their twitching also often shows up on EMG.

If a person has twitching only, an EMG that shows twitching only, and a normal clinical exam, the neuro usually doesn't tell a person that he suspects ALS. At least not from the stories that I have read on this forum, the BFS forum, and elsewhere.

It is not clear from your post whether the only abnormality on the EMG was the presence of fasiculations.

During this whole process, I think that it is helpful to keep in mind that the only real purpose of going to a neurologist when you suspect ALS is so the neurologist can order an EMG for you... because you can't order one yourself. Once the EMG is complete, you need to get a copy of the report and then make your own decision about how to proceed from there. Do you have a copy of the report?

If the only abnormality truly was fasics, then perhaps the neuro is thinking ALS because of the weakness the other neuro found on exam. Also, BFS seems to strike a younger demographic. If your father is over 50, maybe that is also contributing to the neuro thinking ALS. And maybe there were other things found during the clinical exam. Did your father have brisk reflexes or anything else that could point to ALS? Do you have a copy of the clinical report?

I would get copies of all the records before going to the second opinion so you will be well informed before that visit.
 

elb5003

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People with Benign Fasciculation Syndrome have twitching in multiple places and do not have ALS. Their twitching also often shows up on EMG.

If a person has twitching only, an EMG that shows twitching only, and a normal clinical exam, the neuro usually doesn't tell a person that he suspects ALS. At least not from the stories that I have read on this forum, the BFS forum, and elsewhere.

It is not clear from your post whether the only abnormality on the EMG was the presence of fasiculations.

During this whole process, I think that it is helpful to keep in mind that the only real purpose of going to a neurologist when you suspect ALS is so the neurologist can order an EMG for you... because you can't order one yourself. Once the EMG is complete, you need to get a copy of the report and then make your own decision about how to proceed from there. Do you have a copy of the report?

If the only abnormality truly was fasics, then perhaps the neuro is thinking ALS because of the weakness the other neuro found on exam. Also, BFS seems to strike a younger demographic. If your father is over 50, maybe that is also contributing to the neuro thinking ALS. And maybe there were other things found during the clinical exam. Did your father have brisk reflexes or anything else that could point to ALS? Do you have a copy of the clinical report?

I would get copies of all the records before going to the second opinion so you will be well informed before that visit.
Well I just called my Dad. He ordered all of his reports, so he should have them shortly. The doctor didn't say exactly what the emg said, only that there were abnormalities in multiple muscles. He told him that he suspects early onset ALS. The main reason why I'm confused is because from what I read you need so much more information to actually make a correct ALS diagnosis. This doctor spend no time reviewing my dads case. He didn't order any other tests. He didn't even want a follow up. He said he was going to send him back to the other neurologist that specializes in epilepsy.
 

zoohouse

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I am so sorry that you are getting this run around. I think that it is a very good idea that you get a second opinion. When we got ours, he wouldn't even look at the EMG, and did his own, then he looked at the other one. He was a neurologist that specializes in ALS. Also they must put their hands on a person to determine what upper motor neurone are affected. In the mean time, your father should consider his diet, some recent research suggest high carb/ high calorie diets can slow progression, and definitely get rid of all processed foods, or anything with MSG in them. There are many here that have very slow progressing ALS or PLS. It sounds like your father looks after his body and that will be an asset, also the fact that he has family that obviously cares for him. There is one other component that is noted in slow progressive ALS, and longevity with this disease and that is practising a faith (prayer) or meditation. I hope that all turns out well no matter what the final outcome. As many would say on this forum, they aren't dying from ALS, they are LIVING with ALS.
Paulette
 

elb5003

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I am so sorry that you are getting this run around. I think that it is a very good idea that you get a second opinion. When we got ours, he wouldn't even look at the EMG, and did his own, then he looked at the other one. He was a neurologist that specializes in ALS. Also they must put their hands on a person to determine what upper motor neurone are affected. In the mean time, your father should consider his diet, some recent research suggest high carb/ high calorie diets can slow progression, and definitely get rid of all processed foods, or anything with MSG in them. There are many here that have very slow progressing ALS or PLS. It sounds like your father looks after his body and that will be an asset, also the fact that he has family that obviously cares for him. There is one other component that is noted in slow progressive ALS, and longevity with this disease and that is practising a faith (prayer) or meditation. I hope that all turns out well no matter what the final outcome. As many would say on this forum, they aren't dying from ALS, they are LIVING with ALS.
Paulette
Thank you for your kind words . My dad has diabetes that is very controlled with diet. He watches it very closely so he does not need to be on any diabetic medication. This doctor did not put any hands on my Dad. Like I stated before the first time my dad ever saw him he gave him a diagnosis.
 

DebbieT

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My husband was diagnosised two years ago. It took 1 year of testing and visits to Neurologist before the doctors here in New York would give me a diagnosis of ALS. I got three opinions. My husband did have muscle lose but didn't have twitching. There is not one test that can tell you that you have ALS. If it was that easy they could find a cure. Everyone is different and many things need to be ruled out before that diagnosis like lyme disease. My husbands progression is slow and he is living with ALS. I agree with the previous post that diet is so important. It is my believe that ALS comes from the toxins in our environment which includes what we put in our bodies and the air that surrounds us. I am surprised that more people aren't diagnosised with ALS.
Best of luck to you.
 

elb5003

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My husband was diagnosised two years ago. It took 1 year of testing and visits to Neurologist before the doctors here in New York would give me a diagnosis of ALS. I got three opinions. My husband did have muscle lose but didn't have twitching. There is not one test that can tell you that you have ALS. If it was that easy they could find a cure. Everyone is different and many things need to be ruled out before that diagnosis like lyme disease. My husbands progression is slow and he is living with ALS. I agree with the previous post that diet is so important. It is my believe that ALS comes from the toxins in our environment which includes what we put in our bodies and the air that surrounds us. I am surprised that more people aren't diagnosised with ALS.
Best of luck to you.
Thank you for your response, and I'm sorry you have to deal with this terrible condition. When you say muscle loss, how was this observed? My dad feels no muscle weakness. He still does 45mon of cardio 5 days a week.
 

affected

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He told him that because the MRI and blood tests came back clean he suspects my dad is showing the beginning signs of ALS. He is basing this diagnosis off of one EMG test. Is it possible to make a diagnosis of ALS with just this little amount of information?
That doesn't sound like a diagnosis to me - he suspects.

His bedside manner sounds awful, I would try to stay calm and get a second opinion.
 

Dusty7

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Eric,
"What is the purpose of a doctor throwing out ALS right away? What benefit can that have?"
The way I view it, they put it on the table as a heads up. Think of it as...
Should I buy that beachfront property in Belize where we want to build our dream house some day? Not if there's even a slight chance I have ALS!
We've always wanted to cruise the South Pacific. Should I do it now or wait 5 years when I can afford it better? Answer is obvious.

Also, he "suspects my dad is showing the beginning signs of ALS." That is a pretty equivocal statement. I'm sure you heard, "He has ALS," but I don't think that's really what the neuro said. And from your research I think you can see that he was giving a quick opinion and not a written diagnosis that would carry any weight with Social Security or the VA, etc. Should he have been clearer that this was an off-the-cuff opinion and not a diagnosis? Sure, but he was probably busy, thinking of a new case... and has lots of other excuses for a poor bedside manner. Such is life...

"Wouldn't there be muscle weakness after a year of fasciculations?"
Fasciculations don't cause weakness and weakness doesn't cause fasciculations. BFS can come without any weakness and ALS clinical weakness can come without fasciculations.

I agree with Bluedog, get your records before you see your next neuro--though he probably will do his own EMG. An awful lot can be learned by doing the EMG that won't be in the previous doctor's summary.
 

elb5003

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I got the results to the emg. I will post them tonight when I get out of work. Just want to thank everyone for your help and support!
 
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