EMG Results

[davegud]

I finally got a hold of my EMG results and could use some help interpreting. My symptoms are cramps and fasciculations that started in August. I had some sensory stuff in July, but am starting to think they were shingles related, since I have previously had a confirmed case. No sensory stuff since July. The cramps and fascics started in my hands, feet, calfs, and forearms, (left side hands, right side legs) but fascics have slowly moved in the proximal direction. They are now in the thighs and upper arms as well as lower back and abs. The results of my EMG & Clinical Exam:

Mild Hyperreflexia at the knee and mild romberg sign

All nerve conduction studies normal

Repetitive nerve stimulation of the left tibial nerve showed after discharges at 5 and 10 Hz with cramp potentials at 30 Hz

Mild Chronic Reinervation of the left first dorsal int.

increased polyphasia of the left extensor indicis proprius.

Moderate chronic reinervation of the left vastus lateralis with high (3+) and mildly long motor units.

Motor units in the tensor fascia lata and tibialis anterior were mildly complex.

No spontaneous activity was recorded in any of the muscles.

Since the exam, I have developed indentations in the thenar muscle of the left hand that started at the center of the palm and are spreading outwards toward the thumb slowly. This started a few weeks later in the right side. My Neuromuscular Dr. looked at pics that I sent (he is far away) and agreed that the muscle was experiencing atrophy. I have a follow up appointment in April, so hopefully this will be addressed then. I have good strength, but I get fatigue immediately when using my hands and have fine motor issues.

My primary concern is the chronic reinervation signs w/out active signs. My concern is that the MRI's of my spine were free from problems. Do radiculopathies usually show up on MRI's? I also know that I have fascics in the exact muscles that showed reinervation. In fact, the very first twitch was in my first dorsal of the left hand. Since fascics are a possible sign of active reinervation, I worry that they and fibs could have been missed on the EMG.

Is it possible that the active signs of reinervation can be missed when the chronic signs show up on EMG? I have read that there is a possibility in early MND that there is a period when things go back and forth before the real progress of the disease kicks in. Any opinions on this?

Thanks.

 

[trfogey]

What has your doctor told you about these results?

And where did you read that "there is a possibility in early MND that there is a period when things go back and forth before the real progress of the disease kicks in"?

 

[davegud]

Trfogey, my only diagnosis was hyper excitable peripheral nerves of unknown origin. When I asked about MND he said that it was unlikely, since there was no spontaneous activity. I was relatively accepting of that open ended diagnosis until the fascics started to increase and move in toward my trunk. This "feels" like something is progressing. It makes me question whether the chronic reinervation is really a result of some old injury or part of something actively going on.

I work in academia, so when I got the hyper excitability diagnosis I got a hold of all the peer reviewed studies that I could find. It appears that there is a limited amount of research that suggests some relationship between hyper excitable nerves and eventual progress to MND.

I had hoped that I could wait until my April appointment, but the spreading of my fascics has me concerned and looking for answers again. I appreciate anybody's honest opinion who knows about emg's, etc.

Thanks

 

[Lavender Lady]

Well it would not be for anyone on here to diagnose your EMG except for a trained doctor in this field. Are you being referred to another doctor? If you are thinking what is wrong with you can be helped early on then seek more help from a doctor. I came on here before I had answers too. I am thankful that even if they new they did not say so. I wish you the best.

 

[davegud]

Definitely not in a rush to hear bad news... I have my fingers crossed for a nice BCFS diagnosis, which I am guessing is the highest probability right now. I am happy with my Dr., but waiting gets tough when things / symptoms progress or change. I feel like a ping pong ball sometimes. Totally convinced things are benign one day and then back to worried the next day. I have seen some posts on here from people that seem to be experts, so I had hoped for their opinion. I continue to pray for health and acceptance that I just don't know right now.

 

[trfogey]

Trfogey, my only diagnosis was hyper excitable peripheral nerves of unknown origin. When I asked about MND he said that it was unlikely, since there was no spontaneous activity. I was relatively accepting of that open ended diagnosis until the fascics started to increase and move in toward my trunk. This "feels" like something is progressing. It makes me question whether the chronic reinervation is really a result of some old injury or part of something actively going on.

What makes you think that the spread of fasciculations in your case has anything to do with MND? What other symptoms do you have that support that conclusion?

If your symptoms were being caused by ALS/MND, you would be noticing more than fasciculations spreading to different parts of your body. And the parts where the fasciculations started would have moved on to more advanced manifestations of ALS/MND. You haven't mentioned any of those kinds of symptoms, so it does leave us to wonder if you actually have those symptoms. Fasciculations are known by the company they keep, after all.

I work in academia, so when I got the hyper excitability diagnosis I got a hold of all the peer reviewed studies that I could find. It appears that there is a limited amount of research that suggests some relationship between hyper excitable nerves and eventual progress to MND.

I'd appreciate a citation or two to any studies that show, rather than suggest, such a relationship. Anyone can suggest anything, even in peer-reviewed journals -- it's the proof that is difficult.

If all you have is studies that "suggest" such a relationship, however, then citations to those kinds of studies are appreciated also, though we do tend to use them as dartboards around here.

I had hoped that I could wait until my April appointment, but the spreading of my fascics has me concerned and looking for answers again. I appreciate anybody's honest opinion who knows about emg's, etc.

If the EMG you are referring to is the one that your neuro used in diagnosing you with peripheral nerve hyperexcitability, then follow the advice that he gave you at that time. If you are not satisfied with his prior advice, seek a second opinion from another equally- or better-qualified neurologist, not from random strangers on the Internet.

Finally, most folks who try to use the Internet for second-guessing their doctors end up driving themselves, their loved ones, and their doctors crazy with their amateurish search results and theories. Don't be one of those people. Let your doctors do what you are paying them for and accept the fact that it can take many months to get a definitive neurological diagnosis. Providing, of course, that what is troubling you is caused by a neurological condition.

 

[Zaphoon]

There are many on this forum that would rejoice over a diagnosis of PNH.

I copied the following from a fellow's web page. He has had PNH since 1995:

Peripheral nerve hyperexcitablity (PNH) is a generalised term that is used to cover a spectrum of disorders that exhibit the symptoms of continuous involuntary muscle fiber activity Over the years a variety of names have been used to describe these symptoms normally based on clinical observations. Some of these descriptive terms include neuromyotonia (NMT), cramp fasciculation syndrome (CFS), benign fasciculation syndrome (BFS), benign cramp fasciculation syndrome (BCFS), continuous muscle fiber activity, continuous motor nerve discharges, Isaacs syndrome, and undulating or generalised myokymia.

.....

The Effect
The primary effect caused by PNH is involuntary muscle fibre activity in the form of muscle twitches(fasciculations), cramp and cramp like feelings. In turn this may lead to muscular aches, pain, soreness and discomfort. Sensory symptoms (paresthesia) such as pins and needles, numbness, tingling and burning sensations might also be present to a more or lesser degree. Secondary to these, sleep disturbance, fatigue and an intolerance to exercise may also be experienced, though these might not become evident until a period of time after the onset of the main symptoms. All these symptoms can vary in terms of severity with good and bad periods lasting days or months. Normally the twitches are always present while the other symptoms can wax and wane.

 

[davegud]

Thanks everyone. My apologies for bringing my small problems to this site. I am a mathematician, so I like to have concrete answers and I like to have precise proof of those answers. This makes it difficult to accept, "We don't know what is causing this." I also know that in statistics there are always results beyond the standard deviation. The truth is that neither I nor my doctor is sure what is causing my symptoms. PNH seems to be more a description of a symptom rather than a description of a disease. There seems to be a number of possibilities with varying degrees of probability and even these studies are based on small groups of individuals. I just had a moment of weakness yesterday and I reached out for an answer that isn't there.

I trust my doctor & I will try not to speculate based on my limited research. Thank you for your feedback, which I know is good.

I think I will wait until April to see what my Dr. has to say.

As for my specific sources, I failed to document them. I know the research was limited, because there were a few single cases and another paper, which specifically refered to PNH, described four cases that developed MND. They were all relatively recent, as is the term PNH to begin with. Fire away if you know the sources!

 

[wright]

Hello Dave

The key to that EMG was that there were no signs of active denervation (i.e. positive sharp waves and fibrillations). If that EMG was done by a well-trained neuro, there is no way he/she would have missed the active denervation.

Furthermore, chronic reinnervation means little in the absence of active denervation. All chronic reinnervation means is that at some point in your life (could have been months ago or years ago) you had damage to a nerve that caused denervation and healing subsequently occurred (the healing is seen as reinnervation). With ALS, active denervation would be seen in the EMG if you have gotten to the point of reinnervation. That is basically what your neuro told you.

From what you have written in this thread and from what I just read of your previous posts, it sure doesn't sound like ALS to me. Your symptoms are simply too global in nature and have happened too quickly; it appears as if you developed footdrop and then muscle atrophy in multiple limbs in a matter of a few months. That is just not typical of ALS.

Given the rapid nature of symptoms, something autoimmune would certainly be one of the differentials. There are a lot of other possibilities and I'm sure your docs will be investigating all of them. Do your best to relax in the meantime.

Questions for you: Do you have a lot of weakness in the muscles that have atrophied? How is your footdrop (is there any improvement)?

 

[davegud]

Wright,

Thanks for the reassurance.

The foot drop is about the same. I can still lift the entire foot, but can't do much with the 4 toes. I can walk on my heels, but the left foot won't stay up on the heel for very long. On exam the left is weaker than the right. The left foot also catches more when I have been on my feet all day.

The thenar issue is complicated. My pinch grip is good. I couldn't tell you if it is as good as it was in November, but I am able to use my hands. The coordination test where you touch thumb to each finger rapidly is not so good on the left hand and this was seen by a neuro subsequent to the emg who was evaluating me for stiff person syndrome (which I do not have). I also have to exert a lot more mental energy to do fine motor stuff like buttons and leggos with my son. Sometimes I just can't pick up small objects off of a flat surface. Additionally, if I'm holding a single piece of paper while lecturing, the muscle gets sore almost immediately even though there is no weight being held. I originally noticed soreness (before the atrophy started) when I was using a cordless drill for a while or some heavy use activity like a long drive. Now I get soreness and fatigue when I'm shaving in the am. I also get cramps relatively often in the thenar muscle and first dorsal.

I think this latest post has released enough of the tension for me to wait until my April neuro appointment. Sometimes the action of seeking answers provides enough relief to wait for the answer a bit longer. I definitely acknowledge that the highest probability diagnosis is BCFS. I am just hoping to completely close the door on those other extremely low probability things. I think my April visit will be enough to do that.

Thanks again for your expertise.

 

[davegud]

I forgot to mention that I had labwork taken for a potassium channel auto-immune problem and I'm hopeful that this will provide definitive proof of an auto-immune problem. On the other hand, it could also eliminate one of the more benign causes, so I'm hopeful that it is positive! Should hear about that soon.

 

[Bad Balance]

I used to work with a group of scientists providing laboratory and office space. My experience was that no matter what the topic, they were "expert" in telling everyone what to do.

Perhaps some of your energies should be directed to sitting in conference with your doctor and asking him questions directly?

This approach may be much more satisfiying.

 

[davegud]

Thanks for the advice Bad Balance. I will make sure that my April visit includes some serious consult time. The way my previous appointments have gone, it always feels awkward and rushed once the clinical stuff is done. As I'm walking to the car I am flooded with 1000 questions that I wished that I had asked. I think this time I will go in with a written list in case my brain falls out again.

I realize that these forays into opinion-land are futile. I recently heard an NPR story about use of the internet for medical related issues. The general theme was that online communities satisfy a deep need to feel connection. Even the medical forums. I think I had some hope that somebody would chime in and say, "I had the exact same findings and my diagnosis is "x". As I have said, thanks for all of the input. I will report back in April with the latest.

 

[Alyoop]

Just a suggestion, but not only have a list, but take someone else along with you. I get very easily overcome at a doctors appt, and forget the list as well. I always leave having not asked half my questions. My husband comes now and is good at butting in. Sometimes he does it when I prefer him to not!

 

[Lavender Lady]

Best of wishes to you. Please let us know if they find anything or not. Thanks for comming here to ask questions.