New Here and Concerned

[calijill]

Hi all,

I’ve been lurking on the forum for about a month while waiting for my registration to be approved and while I’ve been experiencing troubling symptoms and going through some testing.
It started a few months back with stiffness in the ring finger on my right hand and no longer being able to move my ring finger independently from the middle finger. The finger doesn’t necessarily feel weak, but its independent range of motion is definitely changed. Also, my wrists, fingers, and forearms tire more quickly than they did previously and they get crampy (I suppose carrying around a 20 lb baby doesn’t help this)…and then the twitching started, which is occurs all over my body (including my tongue!).
I had an appointment with a neuro who detected no lack of strength upon exam in the end of August, but referred me for an EMG of both of my arms. The results were abnormal in the following manner:
1. The NCV portion of the test on both arms was normal
2. The needle EMG detected large, polyphasic MUPS with reduced recruitment in 2 muscles on each side. On the right side these were found in the muscle between my thumb and first finger and in the finger extensor muscle in my forearm. On the left side, these findings occurred in the muscle between my thumb and first finger and in the muscle below my little finger. There was no active denervation seen in any muscle tested.
Needless to say, the ‘abnormal EMG’ has scared the crap out of me, and my first neuro referred me to a second neuro (who is a neuromuscular specialist) for another opinion. The second neuro did another exam and found nothing that screamed ALS even though he witness the different range of motion in the fingers. However, he wants to repeat the EMG himself later this month to see what he finds. Thus, I’m just waiting (and scared!). I just wanted to share my story, say hi, and get any thoughts and input those of you with experience may have.

Jill

 

[Alyoop]

I have been exactly where you are and after a long road of EMGs neuro opinions, horrible tests, it turned out I do not have ALS. My first EMG had the same results as yours in all muscles tested. I was incredibly scared but perplexed that I had reinervation, but no denervation on my EMG! Now 4 years later, it's become clear due to progressing UMN signs, that I have a syndrome that could be pls. But my last 2 EMGs have been normal!

It's important that you don't jump on the als wagon and let it destroy you for no reason, believe me it happens all the time. It could be many things. Leave it to your doctors to sort out and in the meantime, forget the twitches, don't study your body for other ALS symptoms and continue your day to day life as before.

 

[susanf]

It's scary but sit tight. Like Aly said it could be something else. Als has many mimic diseases. Have you had an MRI?

 

[calijill]

Thanks, I'm definitely trying not to jump to an ALS conclusion, but this whole process is definitely scary! No MRI yet, the 2nd neuro wants to do his own EMG first!

Jill

 

[Alyoop]

It is terribly scary Jill, but more people end up NOT having ALS than do.......it's so rare.
If your EMG is suspect again, you will need an MRI etc to rule out things like Ms

 

[notgivnup]

Jill, I know it is scarey, by try not to worry, tests could take awhile......it may well be something treatable, as A L S is so rare as stated above. Hoping for the best for you.

 

[notme]

HI

It's a very good sign that you have no weakness. As the others said--there are many other conditions that can cause abnormal EMGs and ALS is only ONE of them--and one of the most rare.

Did the first neuro say it seemed likely? I'd definitely want to see an ALS specialist personally. Any EMG questions can be answered here best by a gentleman named Wright. He's the resident expert in that area.

My EMG wasn't normal. My neuro exam wasn't normal--but the neuro doesn't think I have ALS (although has no clue what I DO have, lol) so try to keep faith that it's something treatable! Actually, it's almost funny--your EMG showed the same areas with issues as mine, thumb and first finger and pinkie side. Hopefully, the NCV missed something--as pinched nerves can cause issues in those muscles (the ulnar nerve)

 

[trfogey]

Thanks, I'm definitely trying not to jump to an ALS conclusion, but this whole process is definitely scary! No MRI yet, the 2nd neuro wants to do his own EMG first!

Jill

No need to continue trying to avoid "jump[ing] to an ALS conclusion". You've already jumped, landed, and decided to settle in for a spell -- because you like the view, I guess. No telling why, but it is what it is.

The reason you're scared is because you don't listen to the people who know what they are talking about and would rather read a bunch of gossip from other people who twitch. How do I come to this conclusion? Because you've already ignored both of your neuros who found no weakness. In particular, you've ignored the neuromuscular specialist who has already addressed your concern about ALS directly. I imagine that possibility popped into your mind between the two neuro visits after you read the EMG report and then you looked up "large polyphasic MUPS" on the Internet because you didn't trust your doctor to explain what they meant and had to see for yourself -- because your ability to interpret medical information you find on the Internet is better than the training and knowledge that your neuros spent the better part of ten years of their lives to obtain, I guess.

But it did give you a "gotcha" question for the second neuro, didn't it? Hope it felt good, because the price of that moment of satisfaction is all the fear you have now. Only you know whether it was worth it. Must have been, because you signed up here and started posting.

Enjoy your stay on the board.

 

[TedH5]

calijill,

The mind is a very strong force and can manifest fears that drive anxiety, irrational thoughts and even physical ailments. You have received some very sound advice. The fact that there is no weakness is a very positive sign. The abnormalaties in the EMG could be answered once you have your MRI done. Listen to your Dr's, they don't suspect ALS so neither should you! No weakness = No ALS!

 

[calijill]

Trfogey, i unserstand your point of view and how you arrives there from my post.
Perhaps in the interst of brevity in the first post, I was unclear. The reason I 'won' am EMG from the first guy was the lack of range of motion in my ring and middle finger, which he perceived as odd, but not weak and wanted to check out in spite of a good exam.

When the results from the EMG came back to him from the guy who did the EMG (who was the one who told me about the exam being abnormal and that I should be followed for 6 months), my neuro told me I should be seen by a neuromuscular specialist. So, I went to one. Believe me, I didn't go looking for this problem. The second guy said that he wanted to redo the EMG to hear to sounds himself during the test, and he definitely acknowledge the stuck fingers. And now, I have an EMG scheduled for the end of the month, and I'll go from there.

Maybe I am just stimulating the economy with these tests, but I am just trying to follow the neuro's advice and live with the anxiety in the mean time.

Thx, others for the kind words!

Jill

 

[trfogey]

What you left out was why you went to to the first neuro in the first place, which I suspect has more to do with twitching than it does with stiff fingers.

Nonetheless, there are many things that can cause the EMG results that you have -- neuropathies, myopathies, radiculopathies, nerve entrapments, etc. There is no need to focus on ALS or any of the MNDs at this point -- you're choosing that of your own accord. Unless you are asking us to believe that any of your doctors advised you to seek out information and support, online or otherwise, from or about people who are or deal with ALS/MND patients.

Did you get that advice, calijill?

 

[calijill]

I went for both the twitching and the fingers.
Nope, I sought the online advice and support of my own accord because i don't know anyone outside the Internet who has experienced anything remotely similar. I'm not a "I've had 7 clean emgs, could i still have ALS." I'm someone with a strange emg who the emg guy spooked with their comments.

Your point that I should listen to the docs with many years of training is well taken. I get that, and I will do my best. I've had this happen in my professional life and it drives me nuts.

In the mean time, it helps to have a place to talk.

 

[TedH5]

Trfogey, I have the utmost respect for your knowlede, determination to ensure that false info is not spread and all of the advocacy you have done on behalf of all PALS on this and numerous other forums. While I wish that you and everyone else did not have ALS, as a community we are fortunate to have your knowledge and passion on this forum. Your frustration with newbies is understandable. Especially with the incredible amount of people who come here out of no reason but irrational fear due to some benign twitching and do not even bother seeing a Dr. and rely on self diagnosis.

That being said while I agree with you and your analysis of the most likely other possibilities is spot on as usual. I personally can understand that if your Dr ordered an EMG and you do not know what it is you research it and find that among many other numerous things it is used to test for the possibility of motor neuron disease why you may become a little concerned and become anxious. Most people are afraid of the unknown. When they order the test and you have two weeks or so to think about it unfortunately for many people their mind will run away and irrationally fear the worst.

Calijill did not come here insisting she has ALS. Just sharing her concern. Now when she has the next EMG performed by a Neurologist and he tells her it is definitely not ALS and she still comes to the forum then we have a problem. Why do we have a section titled "Do I have ALS? Is this ALS?" if we are going to ridicule people that come and ask questions? I too get frustrated with the one's that continue to come without ever seeking a Dr's advice or have seen Dr's who tell them they are healthy and they keep coming back. All of them can be banned as far as I am concerned. If I was told by a Dr. that my symtoms "do not scream als" but none the less want to have a Neurologist perfom an EMG I may be asking questions if for no other reason then to reassure myself that I did not have ALS.

I remember on my very first post when my Neurologist, a MND specialist, who graduated from Emory and did a fellowship under Dr. Glass, advised me that I most likely had ALS but could not give me a definitive diagnosis until additional tests were run and all the criteria was met, many people (not you) told me that there were numerous other things it could be besides ALS and questioned the Dr and even criticized me for putting in my profile that I had been diagnosed with ALS.

My point is that I think we should allow people to ask questions that is our opportunity to educate them. If they ignore their Dr's as well as our advice then at that point they deserve to be challenged and ridiculed.

She did not claim she has ALS, neither is she spreading false information or even arguing with anyone including you. The words see a neuromuscular specialist and abnormal EMG has just scared her. When you leave the Dr's office and get home lots of questions come to mind that you did not think to ask. Your appt is weeks away you are nervous so you come to ask questions on a forum that has a question section. I see no harm in that and no reason to not believe she went to a her Dr for any reason then her claim that she was having range of motion issues with her fingers. I do not believe she even mentioned twitching, unless I missed it, yet you have determined that is why she went to the Doctor. Personally with all of your knowledge and expertise I believe that you are msiing an opportunity to educate and reassure her and send her on her way rather then question her motives etc.

calijill...all of that being said. If you focus on the facts in trfogey's response he is 100% correct as he nomally is. Let the specialists do the EMG, if he finds abnormalaties then they will probably order an MRI. Remember an EMG is only as good as the tester so having an expert do it will be beneficial. It is most likely one of the many things that trfogey pointed out which are all also reasons EMG and NCV's are ordered. Having a clean NCV and abnormal EMG is most likely why the Dr. wants you to see a specialists and to be followed for 6 months.

Here is a quote as to why EMG's are ordered:
What are some problems for which EMGs are ordered?
EMGs are usually ordered when patients are having problems with their muscles or nerves. They test the nerves and muscles of the body’s extremities, looking for a problem in either one of these areas. An EMG may be ordered to see if you have a pinched nerve in the back or the neck. If you have tingling or numbness in your arms or legs, an EMG may show if you have a nerve entrapment somewhere or a nerve injury. Weakness of the muscles or “fatigue” (tiredness) may be indicative of nerve or muscle disease and require an EMG. There are many other medical problems that might suggest the need for an EMG. If you have any doubts as to why you need this test, ask your doctor.

Best of luck and feel free to ask questions. Just be sure to listen to your Dr's as well as the sound advice you receive here.

 

[calijill]

Agree that it could be many things as you and trfogey point out, and I never would gave found my way here without having the EMG experience that I had. I was simply in search of people with similar EMG findings and their experience. Having read Wright's many factual posts about lack of denervation signs even when there are signs of reinnervation meaning an old injury was helpful to me. Do I have moments of irrationality? GUILTY! However, I am mostly rational, but I am human too, and the whole experience has been unsettling.
Frankly, if the neuromuscular guys tells me I'm fine, I fully intend to believe him and go about my life. We shall see what he says after the EMG. And if I'm back insisting I have ALS if he clears me, feel free to ridicule
I am grateful to the forum for both the welcome and tough talk. Thats reality.

 

[trfogey]

TedH5,

With all due respect, I'm simply pointing out to our new poster that the Internet is a lousy place to go for answers to very technical medical questions, mainly because search engines don't discriminate between high quality information and low quality information. I can understand someone looking up medical information on the Internet. I can understand someone getting scared by medical "information" on the Internet. I can understand feeling a need to ask questions and talk about fears.

What I have difficulty understanding is that scared person choosing to do that here, with people they don't know, who they will likely never meet, and whose veracity can't be determined, rather than going to doctors that they do know and whose credentials they can verify, and whose expertise, opinions and advice they've already paid for. Frankly, that seems silly to me, but it happens multiple times a week here, so I've learned to accept it.

So, when a story seems odd to me, I probe it. You might not like the way I do so. That's your prerogative. You say I'm wasting an opportunity to educate. The way I see it, I've only got so much time and energy to spend educating folks, so I'd prefer to spend them on those whose minds aren't already made up. Been spending too much time doing that lately and I'm a bit tired.

All the best to you.