Dirty EMG followed by multiple clean ones...multiple symptoms. Looking for opinions

Jl1994

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Hello all,
Very grateful to be able to look for help on this forum.

I had a dirty EMG done about a year ago that did show what the md labeled "acute dennervation" Since then I have had two clean EMGS without the finding that was reported in 2023. What scares me is that my symptoms in the leg where the dirty finding was found has gotten worse. I do not have any clinical weakness yet but i have dysesthesia in the lower left leg. I can still feel all touch and sensory symptoms the leg just feels light, airy, and almost dead. It is almost like I have to think to lift it when I walk.

I do have a finding of small fiber neuropathy via skin punch biopsy. I have read that SFN and MND often co exist so the finding of this did not put me at ease. I also have a positive tilt table test for POTS. Besides this, the leg sort of aches at times.

The neurologist told me to come back in 6 months to be re evaluated.

- Clean Spine MRI
- Clean Brain MRI
- Currently being treated with IVIG for the SFN which I see no difference.
- bilateral hyperrefflexia
- atrophy of left limb

My question is---I know MND is supposedly no sensory. However, I have heard many other things from even some mods on this forum that they do admit to a small change in how the effected limb feels. Maybe it is not an overt difference but there is some sort of hard to explain change in how the limb feels. Mine feels light, airy and just different than the rest of my body. What is the referendum on SFN, feeling and ALS?

What is the general thinking on a dirty EMG followed by clean?

Thank you in advance!
 
Cutting through all the possible labels, it really is about failing, not feeling. We hear the "dead" feeling described often here but it is not a hallmark or precursor to ALS.

Yes, research has found some mechanisms through which ALS may have a sensory component beyond the pain and stiffness of immobility and undue pressure on joints and tissues. But it is still a minor component and ALS still announces itself with clear, clinical functional impairment along with a constellation of EMG findings that extend beyond the region(s) of concern.

A finding of acute denervation without chronic denervation (both in specific respects are required for an ALS dx) , followed by two clean EMGs, raises no concerns for ALS. SFN of course has sensory manifestations and can improve via a variety of approaches, including PT, positioning, and footwear, that you may want to consider in conjunction with and beyond the IVIG trial. I would consult a physiatrist (physical medicine/rehabilitation) for a regimen that can help.
 
Hi Igelb,

Thank you for the response. I just hope my symptoms do not continue to progress and I hope no clinical weakness occurs. Appreciate the response again
 
I would also like to ask....is it possible to have ALS with a normal NFL blood test level?

My neurologist ordered one 6 months ago that came back normal and ordered another one 2 weeks ago with the results pending.

What is the thinking behind this?

Thanks
 
Yes, it is.
NFL can also be associated with other disorders.
I don't know the neuro's thinking for ordering another test, but you are entitled to ask!
 
Thank you for the response Igelb. I just met with Dr. Dale Lange. He used to run the ALS clinic at Hospital for special surgery in Nyc.

He is going to run another EMG on 1/16 and said it would be thorough. He did a very extensive clinical exam and hit my thenar with a percussion tool which elicited a twitch. He also sent me for genetic blood work.


I am hoping I get answers soon. I now experience cramping in the left tibalis anterior and left forearm.
 
EMG performed by Columbia Latest result. What does left toe downing and right toe mute mean?
Also they did not provide latest a table which makes it hard to interpret but some of the muscles say reduced.....any help with this?

Thank you
 

Attachments

No atrophy noted . Downgoing refers to bablinski and is normal. Mute means nothing happened. That is neither unusual or worrisome. The reduced was related to submaximal effort according to the report. All in all a normal emg and exam according to the report. What did the doctor say?
 
The technician didn't say much. The results were released to me through the portal. She said it is "reassuring for no als, however your doctor will reach out to you." which felt nice to hear. The reduced recruitment on submaximal effort is what is worrisome to me matched with my symptoms. Also, I thought Columbia would provide table formatting for their EMG reports. Not sure why they don't.

Thanks for the reply Nikki. I suppose I will wait to hear back from the ordering physician.
 
It isn’t unusual for portal results not to have the pretty tables. All the information is there just more annoying to read
 
It is just odd because of I felt like I was giving maximal effort and yet they write sub max w/ reduced recruitment. My perceived weakness has been 14 months but really set in about 12 months ago and has spread up from left leg to left arm. I am getting a 2nd opinion and another EMG performed on Thursday 1/16. Will post results again.



Thanks for the responses.
 
You are getting a second EMG 10 days from the first? If you don't believe Columbia's, it's hard to see how you will believe someone else's, but I hope you do. People with all manner of serious neurological conditions wait weeks to months for this test.

Not much more to say here.
 
I hope I do, this one will be much more thorough. Columbias was 5 min long needle exam.
 
When you, as a center, have thousands of EMGs under your belt and likely hundreds waiting, it stands to reason that you can/want to be more "adaptive" as we are in clinical trials, where you adjust the data collection to what the early data show. That includes "early stopping" when the objective has been achieved and results are clear.

Nothing sinister. I hope your 2nd EMG is similarly reassuring.
 
I can only agree with your statement. However, my presentation and the sinister feelings I have behind my condition are truly life altering and if it is MND, I would like to know asap. I am scheduled for the thorough needle exam tomorrow AM. Will post any new findings.

Thanks for the well wishes.
 
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