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Barbie4

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Does anyone know how soon you get the results of an EMG test? Do you get the results right after they do the test or a few days later?

With an EMG, can they tell always whether the upper neurons and lower neurons are affected, by doing one test or do they have to do other tests to check both?

once you are officially diagnosed with ALS, what happens next? Do they put you on medication right away? Do you have to see a bunch of specialists or stick to the ALS clinic neurologist.? Do you have to have a bunch more tests?

My friend goes on Wednesday for an EMG and a breathing test and I was just wondering whether she will come home with results or will have to wait.

Thanks

Barb
 
My husband and I were given the diagnosis of ALS after approximately nine months. He went through many tests. One of the tests he went through was a dna test to check for Kennedy's disease. They had to rule out other tests before the final diagnosis. We also went to three different nerologists and one ALS expert before accepting the final diagnosis. The emg tests are very important and do show if this is ALS. It did show upper and lower. The waiting is very upsetting but we wanted to hear one hundred percent that this was what we were dealing with.

Sandy.
 
Hi Barb. When I had the EMG and nerve conduction tests the Neurologist told me right there that I had ALS. He had done a complete physical and history and had blood work done the week before. He sent me to a second Neuro for a second opinion and after that I said I wanted to be tested at the ALS Clinic. They basically came up with the same diagnosis but did send me for a CT scan and MRI to rule out other causes. They put me on Rilutek right away. The EMG and nerve conduction tests show both upper and lower neurons affected. The breathing test will show if your friend has had any weakening of the lung muscles and they can use that as a base line for further tests later on. Some Neuro's do their own EMG and nerve conduction tests. Some have lab tech's do it. My own experience is better to have the Dr. do the test and you can ask questions while it is being done. Lab people aren't supposed to discuss the test with you. Also the decision to take the Rilutek is your choice. You don't have to take it if you don't want it. Hope this helps you and your friend. Take care. Al.
 
Barbie4 said:
Does anyone know how soon you get the results of an EMG test? Do you get the results right after they do the test or a few days later?

With an EMG, can they tell always whether the upper neurons and lower neurons are affected, by doing one test or do they have to do other tests to check both?

once you are officially diagnosed with ALS, what happens next? Do they put you on medication right away? Do you have to see a bunch of specialists or stick to the ALS clinic neurologist.? Do you have to have a bunch more tests?

My friend goes on Wednesday for an EMG and a breathing test and I was just wondering whether she will come home with results or will have to wait.

Thanks

Barb

Answering your questions in the order asked-

--The results of the EMG are known immediately. Whether they are reported immediately depends on who performed it. My EMG was performed by an ALS specialist, because the referring neurologist strongly suspected ALS based upon my clinical history. When I asked for the results, he told me right then that I "probably" had ALS but that more tests were needed to rule out other possibilities.

--I have been told that an EMG only detects lower motor neuron damage. Basically, what the EMG shows is if there is both "active" and "chronic" denervation, that is, are the muscles losing contact with the nerve that is supposed to serve them; the EMG also will show if there is "reinnervation", that is, whether there are "complex motor unit potentials"- this is because in motor neuron disease, when motor neuons become diseased, neighboring motor neurons will "sprout" additional connections to serve the muscle which the diseased nerve was supposed to serve, i.e, "reinnervate" it. I have been told that upper motor neuron damage is much more difficult to spot and must be seen in clinical observation. One thing they will do is test the feet for the "babinski" reflex- that is, when the bottom of the foot is manipulated, if the toes spread out and up, that is evidence of upper motor neuron damage. So is "hyperreflexia", that is, reflexes in a limb that has been weakened which are greater than normal.

--There is no conclusive test for ALS. It is a "differential" diagnosis made by checking for motor neuron damage with the EMG, ruling out other causes through tests such as an MRI, and by clinical observation. Without progression of weakness it is unlikely to be ALS.

--Once the diagnosis is made the neurologist should, if competent, discuss all options. A second opinion is always an option particularly if the diagnosis is not by an ALS specialist. Rilutek will be offered- it is a somewhat controversial drug because the testing showed it to be of modest benefit and if you don't have insurance it can be very expensive (I'm taking it but other ALS patients reject it). If your neuro is an ALS specialist ask his/her opinion as to the usefulness of the drug. Physical theapy, occupational therapy, and other services are offered based on how advanced a case it is.

The ALS patient will also be offered innumerable opportunities to be relieved of their money by this scheme or that one. My advice is to use the common sense you were born with. You don't lose that when you get ALS.

(Good Lord, I've become an ALS know-it-all, how obnoxious is that:))
 
Dave

Darling I appoint you to anwser all new peoples questions from now on. you have become quite the expert and sumed it up pretty good.:mrgreen:

best wishes
Kim:mrgreen:
 
Dave --

Excellent summary. Should be put on a sticky somewhere.
 
with Thanks

Thank you so much for your very helpful responses.

I think all this neuron stuff is starting to sink in. Her testing is on Wednesday with an ALS clinic neurologist and I was wondering whether she is going to come home with a DX or not or still be kind of in limbo. I am worried, because she says she wants to wear earphones so that she doesn't have to hear the EMG.

This will be her second opinion, and I know it is going to be very hard for her. I am just trying to prepare myself for Thursday when I see her. She was a little worried about why they were doing a breathing test. Dave, your answer makes sense. To compare with later on. Thanks also for your opinion on Ritulek(not sure of the spelling) I didn't realize it was so controversial of a drug. I assumed it for sure helped. Dave THANKS.

She said her hand was numb over the weekend, and that yesterday one of her fingers was "sticking" as she described it. She is upset, because she was told that if she has ALS that because she is so young, it will progress slower.?

Sandy I am so sorry that it took 9 months for your diagnosis. That must have been unimaginable. The waiting is terrible.

Al, thanks for your help. I am going to try and order that NFB movie from their site. You are just such a wealth of knowledge and help.

with thanks

Barb :-|
 
Barbie4 said:
Thank you so much for your very helpful responses.

I think all this neuron stuff is starting to sink in. Her testing is on Wednesday with an ALS clinic neurologist and I was wondering whether she is going to come home with a DX or not or still be kind of in limbo. I am worried, because she says she wants to wear earphones so that she doesn't have to hear the EMG.

This will be her second opinion, and I know it is going to be very hard for her. I am just trying to prepare myself for Thursday when I see her. She was a little worried about why they were doing a breathing test. Dave, your answer makes sense. To compare with later on. Thanks also for your opinion on Ritulek(not sure of the spelling) I didn't realize it was so controversial of a drug. I assumed it for sure helped. Dave THANKS.

She said her hand was numb over the weekend, and that yesterday one of her fingers was "sticking" as she described it. She is upset, because she was told that if she has ALS that because she is so young, it will progress slower.?

Sandy I am so sorry that it took 9 months for your diagnosis. That must have been unimaginable. The waiting is terrible.

Al, thanks for your help. I am going to try and order that NFB movie from their site. You are just such a wealth of knowledge and help.

with thanks

Barb :-|

Barb-

It is "Rilutek", not "Ritulek", lol. And yes, each ALS patient should research it and make up their own minds about it. We've had extensive discussions both here and on other ALS boards about its' usefulness. I've read all the studies and come to the conclusion that it probably does provide a modest benefit. But other PALS, people whose opinions I respect, disagree. I've been told the disagreement extends to the medical professionals- at a recent support group meeting I attended, one participant told the group about his consultation with a preeminent ALS expert who told him the drug was useless, that COQ10 was much more promising. But my own neurologist disagrees with this assessment of Rilutek.

As to how fast she will progress, one of the things you will find about ALS is that there are no absolutes, everyone is different. But in general, the older you are when diagnosed, and the farther along in disease progression, the worse the prognosis.
 
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Oh, and thanks everyone for the kind words. Like I said, it is kind of obnoxious how much I've learned about ALS in so short a time. That's the curse of this disease, I suppose, being painfully aware as our bodies slowly dissolve around us. Then again, I've always wanted to know, for better or for worse, what's going on around me, so why should this be any different?
 
helpful info

Dave:

I do not find you obnoxious at all. I am thankful you are giving me the info that you are. You are well informed and diagnosed only since Feb. I am grateful. sorry about the mis spelling. you say some people are for Rilutek and some against. Any major side effects?

With regards to how quickly or how slowly this disease progresses, we are so hoping it is slow. I am worried about what she told me today about her fingers. Terrified is the word really.

Thanks again for sharing your wisdom.

Barb
 
Barb-

I have had no side effects to Rilutek at all. They do regular blood tests because for some it negatively affects the liver. My first blood test was completely normal but we will keep watching. I also take the supplement Milk Thistle (Silymarin) which supposedly helps liver function. I know Rilutek does have negative side effects for some users, including nausea. The problem here is that it is supposed to be taken on an empty stomach so if you eat something to alleviate nausea it interferes with the bioavailability of the medication. But as I said, I haven't had that problem.

I was really just poking fun at myself about the obnoxiousness (and at you a bit for the misspelling)- you have to keep your sense of humor. The internet can be a great learning tool, I learned a lot about ALS that way. But you can "learn" the wrong things as well. Just about every web search for "ALS" will turn up a link to the website "Even Better Now", which is in my opinion one of the scams to be avoided. You just need to be careful as you educate yourself.
 
Dave ,
you are so knowledgeable about the EMG. I am going for mine in 3 days, I am terrified. Sometimes I think I don't want it, because I don't want to know or hear the words ALS. But, they say it makes a lot of noises. What noises are the sounds of the abnormal results. I know I will be analyzing every sound there is.

Thanks and terrified,

Terri (SPUD)
 
Terri-

This page explains the emg procedures pretty well:

http://www.stjohnsmercy.org/healthinfo/test/neuro/TP012.asp

In general, the "noises" during an emg represent electrical activity of the muscles. There should be no activity when the muscles are at rest, so if the noise continues after insertion of the needle, that is abnormal. You will then be asked to "contract" the muscles and readings will be taken; at this point there would be noise from both normal and abnormal muscle readings but the abnormal readings would be greater (what they call "sharp wave potentials"). I do not myself know how to distinguish between normal and abnormal noise patterns.

My advice- try to just let them do their thing and not get too anxious.
 
The noise also sounds kind of like when the cable TV goes off and you get that hissing static noise. It sounds weird at first especially if they have the volume turned up. Not too scary though if you know beforehand.
 
good web page

Thanks for the web page about EMG's. I found it very helpful.

Have a good night :)

Barb :)
 
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