Dirty EMG Questions - for my neuro appt Thurs

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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Xina535 on January 20th, 2015, 10:21 am

Ok thanks for the info about the nerve conduction tests. I guess I will go to the neuro and just see what comes of it.

I went back and forth about deciding on if I should go to the neuro or if I should wait....back and forth...it gave me even more anxiety thinking about my decision. So with the help of many People on here and in my life, I said "Yep - gonna go do it". And then I find out he's not a good EMG Performer....which I don't get because he is a Professor of neurology at a University. ?? So then I'm back with the anxiety on if I should go or not...but I am going to just stick with my initial decision.

But Vince, I can't believe this! You have prominent atrophy and you are just living like this?? Doesn't that mean the muscle wont ever grow back? I am at a loss and I feel for you! I really hope something can be done... :(
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby misterjuanperalta on January 20th, 2015, 10:46 am

I'll accept atrophy over *** any day.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Xina535 on January 20th, 2015, 10:54 am

That goes without saying, I think. We are all thankful we have "easier" things happening to our bodies.....but if the condition is not something fatal, then there should be some sort of treatment or correction plan to get function back, so I am sorry to see Vince in this situation.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Cobber on January 20th, 2015, 8:28 pm

Just to add to what people are saying here. I would not get too caught up in the terminology used in the EMG but focus more on the result and what the Neuro says.

You can read my previous posts to see my situation. 2 years twitching in the left leg (especially calf), 24/7 all day every day for 2 years, never stops. Confirmed left calf atrophy. Confirmed loss of functionality in left toe (it doesn't raise off the ground, but pushes down fine). EMG and MRI showed problems resulting from my spine (stenosis and disc herniation). Basically my spine is a mess and it's likely that over time it's caused the left leg issues.

Thankfully though I have no pain and I'm able to try and keep the muscle that remains in the left leg by working out. While the muscle mass has shrunk on my left leg it still has strength to exercise. But it won't grow back again to the original size (probably unless I have an operation).

Like Vince.... I'm told my spine condition will probably get worse over time unless I have an operation. However while I'm still running and working out there is no need to operate just because I have a thin left leg and constant twitching.

If anyone has issues beyond just basic twitching it's a good thing to get an EMG/MRI but I don't think we should get messed up by the finer details/terminology of the test. The neuro can summarize it for us. That's their job.

Stay well everyone!

Cheers
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Little Lost on January 20th, 2015, 9:35 pm

If it were me, and you were happy with your last neuro, then I would see if you could just wait out the 3 weeks until your next appointment. Serial emgs done by the same operator, same machine type, same set up, etc may give a more accurate comparison of what has been going on with you over the last year, ( since you last saw him/her).

Of course an isolated emg data will tell you if there is anything worrisome, but they may not be able to compare it to data done on you in another establishment.

I got 2 performed in the same clinic a year apart , and they were able to open my file and compare my nerve conduction speeds, emg findings, and report there was no statistically significant changes over the previoys 12 months etc. When I went to a private clinic, even though I had my NHS results, they didn't do this, different programme or something. Depends how much you want this " then vs now" parameter.

I would also cancel if you have any doubts about this neurologist. He may well be fantastic, but remember you can talk yourself into and out of anything, and if you don't trust him, then you will be doubting any good news he gives you before you even get home. If you have little faith in him then you may as well go out to the nearest river and toss your money in and watch it flow away. Wave as it disappears, because in your head you will discredit everything he/she tells you, and you will be back to square one, except with lighter pockets and probably a really *beep* off husband.

Just my experience.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Xina535 on January 21st, 2015, 12:38 pm

Cobber wrote:Just to add to what people are saying here. I would not get too caught up in the terminology used in the EMG but focus more on the result and what the Neuro says.

You can read my previous posts to see my situation. 2 years twitching in the left leg (especially calf), 24/7 all day every day for 2 years, never stops. Confirmed left calf atrophy. Confirmed loss of functionality in left toe (it doesn't raise off the ground, but pushes down fine). EMG and MRI showed problems resulting from my spine (stenosis and disc herniation). Basically my spine is a mess and it's likely that over time it's caused the left leg issues.

Thankfully though I have no pain and I'm able to try and keep the muscle that remains in the left leg by working out. While the muscle mass has shrunk on my left leg it still has strength to exercise. But it won't grow back again to the original size (probably unless I have an operation).

Like Vince.... I'm told my spine condition will probably get worse over time unless I have an operation. However while I'm still running and working out there is no need to operate just because I have a thin left leg and constant twitching.

If anyone has issues beyond just basic twitching it's a good thing to get an EMG/MRI but I don't think we should get messed up by the finer details/terminology of the test. The neuro can summarize it for us. That's their job.

Stay well everyone!

Cheers


Thanks Cobber. Wow, that sounds very scary what you went through. I am glad they found the issue. I will try to keep my cool and listen to just the summary.

If it were me, and you were happy with your last neuro, then I would see if you could just wait out the 3 weeks until your next appointment. Serial emgs done by the same operator, same machine type, same set up, etc may give a more accurate comparison of what has been going on with you over the last year, ( since you last saw him/her).

Of course an isolated emg data will tell you if there is anything worrisome, but they may not be able to compare it to data done on you in another establishment.

I got 2 performed in the same clinic a year apart , and they were able to open my file and compare my nerve conduction speeds, emg findings, and report there was no statistically significant changes over the previoys 12 months etc. When I went to a private clinic, even though I had my NHS results, they didn't do this, different programme or something. Depends how much you want this " then vs now" parameter.

I would also cancel if you have any doubts about this neurologist. He may well be fantastic, but remember you can talk yourself into and out of anything, and if you don't trust him, then you will be doubting any good news he gives you before you even get home. If you have little faith in him then you may as well go out to the nearest river and toss your money in and watch it flow away. Wave as it disappears, because in your head you will discredit everything he/she tells you, and you will be back to square one, except with lighter pockets and probably a really *beep* off husband.

Just my experience.


Very good advice! I totally agree with you. I don't want to go back on my decision that I made to see this neuro, though. I will go and see how I feel about him. I will definitely get a thorough clinical work up and then determine if I want the EMG done by him or not.

About my neurp appt in Feb...it was on Feb 6. Today at physiotherapy, one of my therapists there has been trying to get me to see the orthopedic doctor they all see and trust, as a second opinion, and get this, the ONLY available appt until the end of March is the exact same day (Feb 6) and almost same time of the day 9:40 vs. 9:45. If I reschedule with my neuro now, I am sure the appts are out into March by now. So, I am going to this neuro tomorrow and then maybe I won't need to see my neuro, depending on what happens. (BTW, my neuro...he did the EMG on me, but in just one place in my left arm and one in my left calf, although I had problems with my right hand, and when I asked why, he said "it does not matter where the EMG is done, it would pick up MND anywhere" and I have since learned otherwise....so I am not so sure how I feel about him).

I will post after my appt tomorrow. My physiotherapists feel it's all from my neck - what they think is a facet joint issue and extreme tight muscles. It makes sense because I have the pain in my LEFT neck/shoulder and it's my LEFT arm that is symptomatic. I have no symptoms in my right neck/shoulder or arm. I think I will pass the clinical with no clinical weakness found, since I can test myself and have power everywhere, but when I hold something, everything shakes. When I hold my hand out, it shakes. Feels like I will drop what I am holding.

Is it still perceived weakness if your arm/hand visibly shakes when doing something and tires out easily?
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby misterjuanperalta on January 21st, 2015, 1:19 pm

A mechanical problem affects performance. For example, engine idle problems in cars do not mean the engine is bad or weak, just that other factors are interrupting proper function. Note, I'm not a mechanic.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Xina535 on January 21st, 2015, 1:30 pm

I knew I should not have googled......because when I did, this time I saw this page, for the first time ever.
http://alsn.mda.org/article/pain-als-wh ... arch-shows

I am so confused! Partly in this article, they are saying "in all stages"

"New research shows that pain is common in all stages of ALS, but that it often goes unreported and untreated."

but then later says this:

"Q: Is pain in ALS associated only with late-stage disease, or do some people experience it in the early or middle stages?

A: With the exception of muscle cramps, or fasciculations, which occur early in the ALS disease course, pain is related to more advanced stages of the disease."


I am most concerned about this part, because my pain is in my neck and shoulder, and the therapists think I have facet joint damage:

"A: There are several types of pain in ALS. Cramps are a typical type of pain, sometimes very severe and localized at the lower extremities, and less frequently at the hands, and the abdomen, and even at the tongue. Articular pain is more often localized at the shoulders. Musculoskeletal pain is also quite common, and occurs in the back, legs, arms, shoulder and neck. It is related to damage to bones, tendons, ligaments and joints."


I thought though that joint/tendon/bone damage only occurs in later stages when mobility becomes an issue. ?
I can't really believe what I am reading here. All stages?
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby misterjuanperalta on January 21st, 2015, 2:44 pm

As I understand, pain in ALS is not sensory, like in neuropathy, migraines, shingles and spinal conditions. It mostly affects muscles. Known injuries are excluded or dismissed to result from ALS. Spinal stenosis, for example, causes cramps and pain. All other causes must be ruled out to conclude pain is due to ALS.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Xina535 on January 23rd, 2015, 3:34 pm

Ok, had the appt with the neuro and had an EMG:

Clinical, EMG and SEP test (some sort of nerve sensory test?) were all clean :D

He diagnosed me with medium-severe depression with an extreme case of anxiety, with psychosomatic disorder. He likes that I started taking amitriptlíne.

Some interesting things - then I have a couple questions for anyone who can provide thoughts:

1) He admitted and said to my husband, "Once someone gets the idea that they could have this awful disease, it is very hard for them to get it out of their head."
2) He said that one woman has visited his office 132 times, convinced that she has ***, only to be told she does not. He is a private neuro, so all visits/tests are self pay. So I feel very deeply for this woman...
3) He said *** starts with lameness. If there is nothing lame, then there is no ***.
4) He recommended me to see a physiotherapist who works in his building, and they work close together. This physiotherapist specializes in treating people who are psychosomatic and believe they have bad diseases. From my understanding, he is going to look at all of my symptoms that I am afraid of, explain them to me and help them feel better. I start seeing him next week, and am pretty hopeful about it.
5) About the SEP test - apparently the average score is "20" and I was at "18" in both arms, which means my score was even better than normal. I don't really know what was measured or what these scores mean, but I'll take it!

About the EMG particularly:
I could tell he was hesitant to give the EMG. When he gave me the EMG, he seemed....unsure...I guess is the word. He put the needle in two places in my left arm (the one which is weak and shaking), one in my forearm and one in the middle of my upper arm.

Forearm: When he stuck the needle in, the waves calmed down and then showed a fast, steady pattern. He said that I was not relaxing all the way and I needed to really relax my arm and hand. Once I did, the line smoothed out/flatlined, but only for a little bit. He had me move the hand, and then he was not so sure about the placement of the needle, so he moved it kind of to a different place. And then apparently, this new spot was what he wanted and said it was healthy.

Upper arm: The only weird thing I noticed was when he told me to move my arm, I did, just a little and the waves went crazy, and then he told me “less” – to lessen the force, he told me to do this like 4 times until I almost had my arm totally still, and it was in this stage that he got the waves he wanted and said it was healthy. I feel like I wasn’t even making any force.
In both cases, he told me that my waves were good enough for a “picture book” – meaning, healthy enough to use as examples in a neuro book. Also, there was a woman in the room overlooking everything and was smiling and giving me thumbs up as she saw the waves on the screen. He said he did not even see any twitches.

Questions - maybe stupid questions:
From the descriptions above about the needle pricks, does anything seem strange to anyone? My last neuro/EMG was much different.

I am pretty surprised that nothing showed up indicating I have neck/back problems, like some other BFSers expierenced. I was for sure it would, since I have pain in my neck and shoulder, and a weak, very shaky arm. It does twitch all around in my arm, so either it was not twitching in those 5 minutes, or it was but the EMG didn’t pick it up or he didn’t read the EMG right. ??

Were the two places in my arm which were pricked enough to determine that there is nothing pathological going on in my entire shoulder and arm? I wonder, if it’s just my tricep that is affected/getting weak, not my bicep, but he pricked my bicep, then was something missed?

I don’t have an explanation for my weak, twitchy and very shaky arm. I wake up to it moving/vibrating on its own. I feel the weakness in it, even while resting, if that makes sense to anyone. Is it safe to say whatever is happening in my arm, that it’s not related to ***? I am hoping this physiotherapist can help me.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Yuliasir on January 24th, 2015, 1:49 am

Xina
whatever hesitant or strange might be the doctor (consider you may just have a bias becasue you were reading about him not being a specialist in EMG etc), hardly a guy could miss something in the clinical. This means that your weakness must be classified as perceived or not strong enough to cause clinical symptomes. You also do not demonstrate reflex changes seemengly (otherwise you could not pass clinical exam). SEP is somatosensory evoked potential test and good result means you have normal or even slightly higher than average speed of neural conduction in your limbs concerned so there is no blockage of signal distribution between your skin (electrical shock), brain (sensig of the shock adn UMN action) and spine (related signal to withdraw the limb and LMN action). This means your upper and lower motor neurons work fine.

I do not know if neuros in your country are trained enough for making psychoneurologic diagnoses, so in order to confirm depression etc. it might be worth to visit a more "profiled' specialist but he seems to be quite straitforward. And I would not doubt his words about a hell of efforts it takes to forget about ALS once getting an idea that it could be an outcome. It is quite obvious for people on this board :)
As for changing position of the needle, most probably he was looking for the nerve bundle to get right in it and have less 'echo' or something like that. it is really normal to stick the needle several times looking for more clear picture.

so, should you have ALS induced changes, you must have asymmetric hyperreflexia, or, later in the course, loss of essential reflexes, pathological reflexes seen on cliniclal exam, changes on SEP demonstrating disruption of conduction pathways or significant slowing down of neuro conduction, and hardly there would be a place on your muscles to see normal EMG picture, especially considering the timeframe.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Xina535 on January 24th, 2015, 3:32 am

Thank you for your thorough feedback! It all makes sense to me!

About the depression diagnosis: his clinic is also a psychological office, in his team are a few psychologists. I will get his official report in the mail soon and will see if there is an official diagnosis on there. I just went by what he said to me and my husband "you have a middle to severe depression, with an extreme anxiety and psychosomatic disorder". He did have me fill out questionnaires about how I feel and at what level my energy is it if I lost interest in this or that.
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby misterjuanperalta on January 24th, 2015, 4:26 am

I'm happy for you Xina. Congrats!
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Re: Dirty EMG Questions - for my neuro appt Thurs

Postby Xina535 on January 26th, 2015, 4:14 pm

misterjuanperalta wrote:I'm happy for you Xina. Congrats!

Thank you!

I can't wait to start this physiotherapy with the neuro's physio guy!
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Re: Dirty EMG Questions - for my neuro appt Thurs

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