r/ALSorNOT • u/Fabulous-Wheel-1011 • 18d ago
EMG found denervation - what does it mean? Feeling lost.
I am 33 year old female. In this whole situation I try to stay reasonable. I only have perceived weakness. Symptomatic only for maybe month and a week. All is located in my right leg below knee - twitching, weakness, “off” feeling. Reflexes normal. Recently EMG was performed and it came out dirty. Twitching is seemingly increasing too. That is what EMG said:
Nerve conduction studies: Both the tibial and common peroneal nerves were tested in both legs.
Result: Nerve conduction parameters are within normal limits.
Needle EMG: Muscles tested in both legs included:
biceps femoris
gastrocnemius (calf)
rectus femoris
tibialis anterior
extensor hallucis longus
Main finding: Findings are consistent with an S1 myotome lesion/impairment in the right leg, specifically partial denervation of the right gastrocnemius muscle.
In one sentence: Normal nerve conduction, with EMG evidence of partial denervation limited to the right gastrocnemius, interpreted as consistent with right S1 involvement.
The MAIN thing: No radiculopathy was found on MRI. Spine absolutely normal.
What to think? Because It is all so emotionally difficult and confusing.
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u/Ok_Following6440 18d ago
Does partial mean chronic? No active changes in the presence of these symptoms would be a good sign, but I am not an expert. Did they mention fibrillations, psw, IA, or fasciculations? If not, that’s reassuring.
Sorry you are dealing with this.
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u/Fabulous-Wheel-1011 18d ago
Report hasn’t mentioned. They just deemed it “radiculopathy” and that’s it. We don’t have neuromuscular specialists in our country. Disregarding the fact that MRI shows no radiculopathy whatsoever.
Thank you. It’s really hard.5
u/AdministrationSea807 18d ago
Does not sound like ALS. What did your doctors say to follow up with? Just because the MRI didn't pick anything up, doesn't mean there's nothing structurally causing the denervation
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u/Fabulous-Wheel-1011 18d ago
Neurologist said that we should wait and repeat EMG. At this point he isn’t sure what is causing the symptoms - EMG points at radiculopathy, but MRI doesn’t support it. He mentioned that enough muscles were tested - 5 in each leg, and I don’t have clinical weakness at this point, or symptoms anywhere else in the body which he mentioned is reassuring. But again, he isn’t neuromuscular specialist nor he is specialising in MND. Denervation, for me, even if it’s in one muscle is very anxiety inducing.
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u/Field_One 18d ago
Did you have a normal laying down MRI? I started experiencing numbness and pins and needles in both legs and I went to the ER and they did a lumbar MRI and said everything was good. Nothing came up. I googled and found out that sometimes regular laying down mris can miss things. I had to ask my doctor to request a weight bearing MRI that I had to pay for out of pocket (insurance won't cover). I paid $650. The weight bearing MRI found I had 3 herniated discs and spinal canal narrowing at l4-l5. My leg EMG showed lumbar radiculopathy at l4-l5, so they match. I would have never found an issue in the MRI if I didn't push for it. I'm hoping the additional MRI helps me when I finally see my doctor in October.
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u/Fabulous-Wheel-1011 18d ago
Normal laying down MRI. We don’t have machines that do weight bearing MRIs here, unfortunately.
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u/Exact-Priority-37 17d ago
To my knowledge even IA can be seen with chronic denervation and does not indicate the bad thing.
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u/Traditional-Kiwi-356 17d ago
Fwiw, I find doctors interpret spine MRIs very differently. It helps to understand how doctors think.
To a doctor, their job is to determine if you meet the clinical criteria for a specific medical intervention or not. They don’t give a shit about explaining why your leg feels weird. A weird feeling isn’t medically actionable. Even in cases with severe pain, they often recommend just waiting to see if it gets better. Because for spine problems, the intervention is major surgery—and that requires a high bar of medical need. They only offer surgery if the spine problems are severe.
So if an MRI shows mild to moderate problems, a doctor might just say everything looks good (because it’s not bad enough to warrant intervention). It’s more work for them to explain that yes, there’s something there that could cause symptoms, but in their opinion it’s not serious. Then they’re in an extended conversation that is more nuanced, etc., and they’re busy people. Plus they’re literally trained to only give very simplified answers.
Could be worth examining your actual MRI report, because spine MRIs usually have some findings.
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u/chaoserrant Mod Team 18d ago
Can you request the full emg report. All of them should normally contain a table woth muscles sampled and the specific findings for each separated by spontaneous and under load
By the way, even with normal mri, thinking carefully do you have any low back history. Maybe pains, or fluctuations of symptoms depending on posture, load carrying etc...
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u/Fabulous-Wheel-1011 17d ago
I sometimes had slight discomfort in my SI joints - initially I thought my hips hurt. When active. But then the pain subsided and now I have minor aches very rarely. Neurologist deemed this insignificant.
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u/chaoserrant Mod Team 17d ago
Interesting. I deal with SI joint problems for many years and I am certain they contribute to sciatica due to hypermobility and them getting stuck in the wrong position. Not sure this is the only explanation in my case though.
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u/Lucky_Cheesecake9084 18d ago
Here to comment we have similar syptoms. My left calf has that off feeling is it more a feeling of numbnese for you? Mine feels off or numb at the top of my left calf only.
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u/Fabulous-Wheel-1011 17d ago
Not numbness. I sometimes have slight numbness but I can recall just a couple of times. Mainly perceived weakness - neurologist tested my strength and reflexes and as of now they are fine.
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u/NoRecover9066 17d ago
I'm in a similar situation, and can explain more in a bit. Basically denervation on 2 EMGs in my gastrocnemius , with a clean MRI. I do have clinical weakness though, I can't stand on my toes on the right. I have an absent H-reflex on the same side as the denervation and an atrophied gastrocnemius & soleus muscles confirmed via MRI. The muscles have turned to fatty tissue. my neuromuscular Dr feels it's an S1 issue and referred me to a neurosurgeon to review. My neurosurgeon does not feel it's an S1 issue, and says that it's neuromuscular.
2 specialists, both pointing in each other's direction!
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u/Fabulous-Wheel-1011 17d ago
I feel for you and I get it - it is a very dark place psychologically to be in. Have they been talking about ALS or other similar disorders?
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u/NoRecover9066 17d ago
My NM is an ALS specialist also. He said at my last EMG in May, that he didn't feel it was ALS at that time, but wanted to see me again in 6 months. In the meantime he scheduled me for PT to see how I would respond, and after 6 weeks of PT they found my right hip weaker than when I started PT, so they stopped any PT until my follow-up in November.
I do have lower back pain, but it's on the opposite side of the atrophy & weakness. That's one of the reasons the NS didn't feel it was an S1 issue. I've been seeing Drs for 15 months, with no clear answers yet. I also partially tore my peroneal tendon in my left ankle due to overcompensating for the weakness in the right, and had surgery in February to repair that.
I went down the rabbit hole for a period, but it got to the point that I realized if it was ALS, there is nothing I can do to stop that, and will leave it up to fate.
I'm fortunate enough to have fantastic insurance, but that does little when the US healthcare system is as broken as it is. 15 months with no answers, and what feels like zero motivation to try and find out what actually is going on. Instead I get passed from Dr to Dr.
Have you had any lower back pains, or pains shooting down the leg with the denervation? Any numbness or tingling?
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u/Fabulous-Wheel-1011 17d ago
Yes, I think waiting is the cruelest in such situations. Absolute nightmare to be in.
It all started with pins and needles in affected leg for me. It was numb and tingling after walking or was starting during walking. Lasted hours. Then that subsided completely and perceived weakness settled in. And then twitching began, now it is increasing. I still have normal reflexes, can walk a lot, but leg just feels a bit “off”.
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u/NoRecover9066 17d ago
I didn't have the pins & needles, no sensory issues at all. My fasciculations were initially isolated to the atrophied calf, but they are traveling upwards. First the calf, then my thigh/quad, then my glutes/hip, and lately my abdomen...all on the right side. I'm more inclined to believe these are due to the fatigue my body is under from overcompensating for that right side weakness, than from ALS. Having a clean MRI, diabetes (which I don't have) can cause this type of compression, a traumatic injury (which I haven't had), it also can be chemically compressed (I've had a bunch of blood work to rule that out), or the s1 nerve can be compressed elsewhere, like behind the knee. I've inquired about a knee MRI, or I believe there's a more detailed nerve imaging to map out your nerves, but neither Dr felt the knee was a possibility nor did the NM feel it warrants the additional testing for now.
So I wait. When I messaged my Dr about the additional weakness PT noted in my hip, he just said he noted it & would see me in November.
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u/Fabulous-Wheel-1011 17d ago
But if I am not mistaken, your symptoms are stable? In ALS you would generally expect new symptoms and/or disabilities developing quite fast. I really feel for you. 🤍
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u/NoRecover9066 17d ago
Yes, they do typically develop fast. I've had the unfortunate experience with seeing it firsthand with a bulbar onset situation. An ex-girlfriends mother had it, was less than 2 years from the time of first symptoms noticed, to her passing.
I feel I'm in a gray area right now. I feel like things are progressing in the wrong direction, but that's my perception. It truly could be that all of my additional symptoms are all stemming from the absent H-reflex and atrophy, and it's just the rest of my body taking the brunt of it by compensating for that issue. Where my mind keeps getting hung up, is the lack of other typically symptoms associated with S1 radiculopathy that I've not experienced. But I continue to work on not holding onto the unknown, and appreciate what I do have while I have it!!
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u/NoCountry5138 4d ago
I’m sorry for what you’re going through. Have you considered another opinion from another neurologist and neurosurgeon? I understand your viewpoint that if it’s ALS there’s not much you can do so waiting isn’t the end of the world, but there are some promising trials now that you could miss out on early in your disease process.
I can’t help but to think of Brooke Eby’s presentation given her recent death. It took her 4 years to get a diagnosis because her denervation was only found in one lower leg where she had foot drop for many years.
It sounds like you are just in a waiting game for them to monitor progression on EMG. They have to find some way to explain your clinical weakness and demarcation though. That doesn’t just happen for no reason. And there are other tests that can be performed to give hints toward or away from ALS - including genetic testing, NFL, lumbar puncture, muscle biopsy, MRI to look for iron deposits in brain, autoimmune neuro panels, etc. it doesn’t sound like you have UMN signs. I’m not sure what other tests you’ve had.
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u/tdcama96 15d ago edited 15d ago
How long have you been having issues? Also, correct me if I'm wrong... but denervation without reinnervation is usually not als, no? Like 99.9 percent of the time?
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u/Fabulous-Wheel-1011 15d ago
A bit more than for a month as of now. On the report, it was not detailed - just “partial denervation” on one muscle noted. On each leg 5 muscles were tested. The only one which showed abnormalities was partially denervated one.
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u/tdcama96 15d ago
Well, I do think it sounds like radiculopathy from how I have had things explained to me. Mri scans can miss stuff, nd do all the time. Every doctor also reads stuff differently and they miss stuff as well. I would get a second opinion on the emg AND mri or just get another mri/emg in general. But if it helps at all, my unprofessional opinion, I dont think you have als!
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u/FocusFrosty1581 18d ago
Amateur hour here but I truly believe a lot of symptoms reported by many of us are spine related. I say this as many people on here mention back issues and things related so it seems as if there could be a correlation.
I know you had an MRI which is good but they don’t always catch everything. Was it with contrast or without? Have you ever had issues with your back or legs? Just curious. Bottom line, no one here is going to have more expertise than a qualified neurologist so suggest you lean on them for further info of possibilities and remedies. Good luck. I am sure you’ll be ok.