Conflicting emg and polyneuropathy axonal type

Status
Not open for further replies.

Agtoro

New member
Joined
Dec 21, 2018
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Laguna niguel
First let me say this site and the folks who help are amazing. I hope I have that much empathy in charity in me.

Question. I have had two conflicting ncs / emg’s - both ncs showed sensormotor poly neuropathy of axonal type. But here is the carrot. First emg showed increased insertion activity and Crd in paraspinal region. However all other areas clean.

First neurologist refers me to another. He looks at the emg and tosses it. Says he doesn’t trust anyone’s emg unless he does it. So he performs another emg and ncs. Nerve conduction shows same sensormotor polyneuropathy of axonal type in lower Extremities and motor neuropathy of upper extremities but needle test is clean. But he says I need to keep testing for als every 4 to 6 months.

So I’m confused. This flys against what I have read on this site. Has anyone heard of this before.

Can axonal polyneuropathy mimic als in constant twitches, slow movements and such. I thought sensory ruled out als but why do they keep testing me for MND.

I’m so tired of twitching and doctor appointments. Ive tried to read old posts but can’t find any clarification. Thanks all.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,333
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
What are your symptoms besides twitching and how long have they been present?

If you could post the last report, that would be helpful.

Best,
Laurie
 

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
City
Mahomet
I was first diagnosed with sensorimotor polyneuropothy, but then went to a good neuromuscular doctor who did another EMG and found ALS. Have had 1 visit to a Certified ALS Clinic that agreed with the ALS diagnosis. I was told at the clinic that older individuals, I am 77, often have the neuropathy. The first neurologist told me that at some time in the distant future, maybe 10 years, I might need a wheel chair. Unfortunately with ALS I have gone from walking fairly good, to a cane, to a rollator in 6 months and will be discussing a wheel chair with the Clinic next month during my visit. Your doctor should be able to ferret out your issues and it doesn’t sound unreasonable to me to test again in 6 months. I suggest you have the EMG done by a neuromuscular specialist. It does not appear as if you have ALS.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,657
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Agtoro, the most important part of diagnosing ALS is a careful history and physical exam, preferably by a neuromuscular disease specialist. ALS is not even a consideration if the exam does not reveal any weakness and upper motor neuron signs. Failure of muscle function is also a hallmark of ALS.

Twitching and sensory symptoms without weakness and muscle function failure don’t cut it, as far as an ALS diagnosis is concerned. That’s why we’re asking about your symptoms other than pain, numbness, and twitching.

The EMG is done to help confirm ALS or to rule it out in people who have documented weakness. A clean EMG rules out ALS. However, a number of other conditions can cause abnormalities on an EMG. That’s why the total picture is required for diagnosis. And even then, ALS mimics need to be ruled out. As Laurie says, it helps us help you if you could post the results of your EMG.

Hope this information helps.
 

Agtoro

New member
Joined
Dec 21, 2018
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Laguna niguel
Thank you for the replies -- I am 44 years old - attached are my two emg / ncs

Symptoms are twitching in my legs non stop - and twitgning in my arms and hands intermediate.

Soreness in my shoulders and things just feel heavier - If I move the wrong way it hurts - and I get leg fatigue very fast now.

If I walk a mile or so my legs and feet look like they have pop corn being popped under the skin.

I have an appointment at UC Irvine ALS / Neuromuscular center Jan 10th. Another doctors appointment. UGG

Any clarification on the emg / ncs will be helpful - I am not medically inclined and all this is new to me. How do you wake up one day and have all these symptoms - oh well. I am sadden by it all.
 

Attachments

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,657
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
You’re in the clear as far as ALS is concerned. Twitching, pain and tingling without muscle function failure points away from ALS.

Your EMG did not find evidence of chronic denervation and specifically says there is no evidence to support a motor neuron disease. This means no ALS.

I’m sure your upcoming appointments will reassure you.
 

Agtoro

New member
Joined
Dec 21, 2018
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Laguna niguel
Karen thank you and I agree with you.

The first emg says no evidence cause they found increase insertion and CRD in paraspinal (in one sector) not the needed two or three sectors according to revised scoring. So I was referred to another Neuro. That doctor did the test himself and he said he not find any EMG issues other than Fasciculation...

I attached both - you got to scroll down for the second.

So, I get it - I have some neuromuscular issue - but why do they keep testing me for als... That's my question. Is this a precursor or is it standard operating procedure to keep testing. I was just hoping someone knew.. Either way thanks again for the help...
 

Agtoro

New member
Joined
Dec 21, 2018
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Laguna niguel
Am so sad and frustrated. Went to the neuromuscular / als center thinking they can help me with the neuropathy. They did another exam and want to do another emg for als. This is gonna be my third emg. I thought a clean emg as posted above meant your good. Now being told they want to test me again. Has anyone heard of this. I asked the doc Why? And he said don’t worry until I worry. I thought a clean emg meant your good. Dldugan wrote above that he experienced something similar but all reply I have read says if you got a clean needle test your clean. Maybe not? Has anyone heard of being retested and results change? How many times are you gonna hear your ok then told maybe not. I know others are going through worst but am stil sad and anxious by it all.
 

KarenNWendyn

Forum Supporter
Moderator
Joined
Jul 29, 2017
Messages
3,657
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Many neuromuscular disease specialists insist on doing their own EMGs. Different docs may interpret them differently depending on their specialty and training.

For example, I notice that your first EMG was done by a physical medicine and rehabilitation specialist (physiatrist). Physiatrists have a different focus than neurologists. Even though they do a lot of EMGs, physiatrists mostly focus on compression neuropathies and they aren’t used to motor neuron diseases.

I’m still confident that when all is said and done, the neuromuscular/ ALS doc will clear you of ALS.
 

Agtoro

New member
Joined
Dec 21, 2018
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Laguna niguel
Hopefully. Karen send me some of your good karma please, just in case 😀
 

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
City
Mahomet
Agtoro,

I did not get a clean test. What I got at the time was an unclear test that resulted in my neuropathy diagnosis. At the time I was also was experiencing left side progressive weakness accompanied by foot drop and falls. The neurologist was not addressing the weakness. He wanted a second opinion and set me up with an appointment 5 months out. I found that unacceptable and began a search for an available neuromuscular specialist at a top rated ALS clinic. I made the appointment only 2 weeks out and asked my local neurologist to make the referral.

Darrell
 

Agtoro

New member
Joined
Dec 21, 2018
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
CA
City
Laguna niguel
Darrell

Thank you for both your replies. I greatly appreciate your time and effort to help calm and clarify my thoughts. Know this, I’m hoping only good things and prayers for you and your family. Thanks again brother.

Anthony
 
Status
Not open for further replies.
Top