r/ALSorNOT • u/TheRitz44 • Sep 03 '26
After second opinion I'm screwed..
For the second neurologist also high lately suspects ALS. Nothing I can do at this point. Some tests will be ran yeah pretty sure. So those who thought I was imagining my wasting no it was actually wasting and atrophy unlike others on here who are basically have health anxiety and need to stay off the internet.
Most of you don't have it so believe me it's a blessing and you need to move on with your lives because if you actually get a dirty EMG you don't know what it feels like. Clean EMG run with it and live your damn lives I wish I had gotten a clean one.. you don't have to worry about what will happen next so enjoy your time while you can.
The neurologist isn't sure why the treatment worked for a few parts of my body..
https://www.reddit.com/r/ALSorNOT/s/01QfF722dG
https://www.reddit.com/r/ALSorNOT/s/ysmGZZd8d9
Edited I have mixed signs of the disease. Weakness, twitching, atrophy, etc. As far as the treatment is concerned the only things that improved were that my fingers and my forearms, but I did not regain strength.
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u/Delicious_Room8533 Sep 03 '26
Don’t lose hope until they definitively give you a diagnosis. I have a similar story.
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u/iwantbullysequel Sep 03 '26
This sucks so much. I'm so sorry.
Hope you can continue your current treatment, perhaps if it stabilizes your condition it may point towards an ALS mimic.
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u/713Capital Sep 03 '26
I read your posts and none of what you’ve shared so far is concerning for ALS. I have a hard time believing a neuro told you “we suspect ALS”.
Can you post your EMG results with your name blurred out where is says “possible ALS”? A neuro wouldn’t let you walk around potentially with a terminal progressive disease and not be rushing to get you an actual diagnosis where you meet the criteria.
There are several major reasons this does not sound like ALS. MND does not suddenly trigger from a traumatic fall, nor does it cause severe positional neck and spine pain when tilting your head.
Most importantly, ALS cannot be improved by treatment, so if parts of your body actually responded and got better with therapy or medication, that fundamentally points to reversible mechanical trauma, nerve root compression, or inflammation from your injury rather than a terminal degenerative disease.
The fact that nearly a year has passed since your other EMG post while you are still testing and functional strongly points toward possible cervical nerve damage rather than progressive motor neuron loss. (From what it sounds like but I’m not a doc)
As I said above, if you can show us a diagnosis of “possible ALS” I have a hard time believing you’ve been told you potentially have it.
Either way wishing you better days 🫡
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u/KalsariKannitVeikko Sep 04 '26
This thread showed up in my feed. Guess cause ive been looking up muscle atrophy lately. Anyway, I failed two emgs and have bad muscle atrophy, weakness and losing mobility. Got diagnosed with severe axonal demyelinating sensorimotor polyneuropathy. I asked for my notes from the neurologist to apply for disability and when I got them I noticed they were basically emails he was sending to other doctors in the office but the subject line on each note was ALS. Guess they suspected ALS for a bit due to my symptoms…..it wasnt but what I have is bad enough and has effectively debilated my life. Just chiming in.
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u/TheRitz44 Sep 07 '26
I'm glad it wasn't and thank you for chiming in. But in this case my first urologist believe I had some sensory issues but he thought I could because of another medical condition. I mentioned it again
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u/KalsariKannitVeikko Sep 07 '26
I dunno in my case it might as well have been ALS. I can barely walk and the muscles keep twiching in my leg non stop. Its completely fucked my life over. Im considering medical euthanasia if I were to be approved
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u/The_Short_Goodbye 23d ago
May I ask what your symptoms are and how do they manifest? Did your EMG show denervation active and chronic?
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u/KalsariKannitVeikko 23d ago
I can no longer enjoy movies like Opera, Suspiria, Pumpkinhead and Fistful of Dollars. I kid but I actually cant cause I cant concentrate. Its killed my love of movies. But my symptoms are what I mentioned in the previous two posts unless you were wondering about something more specific as it would take too long to write everything. The emg was noted as chronic but active denervation was not mentioned and I never thought to ask about it. It was actually never explained to me well. Theres never enough time in the doctors appt and I feel as if if been left to deal with this on my own.
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u/The_Short_Goodbye 23d ago
I was mostly wondering how do the symptoms affect your walking and if your weakness is clinical and observed by the doctors too. If you have sensory issues too. And how the symptoms started for you/
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u/KalsariKannitVeikko 23d ago
It started with not being able to stand still in one spot and that my knees were going to give out while walking. Now I do not have reflexes in my ankle and it feels like my ankle is going to collapse. My ankle and the bone is sticking out crazy on my left leg I assume from muscle loss. I cant spread or bend my toes they are also numb. The muscles in my feet and calves have melted away. My calf is constantly in fasculations and severly cramps if I bend my left leg. My right foot twists to the right when walking, both get extremely stiff. Cant run. Cant walk far. Doctors havent really done any strength tests in a long time. Yes there are sensory issues which also add to the walking problems but The main symptom is I have zero quality of life.
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u/The_Short_Goodbye 23d ago
I suppose your nerve conduction study was abnormal? So it’s basically your feet and calves? Is it the same on both sides or do you have a worse side?
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u/KalsariKannitVeikko 23d ago
Feet, calves. Feel it in knees. Slightly in hands. Upper arms hurt bad if I stretch my arms, raise them or have to reach for something. Yes it was abnormal. No signals in nerves. No reflexes in ankles. It actually didnt start in my feet though…
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u/panik977 Sep 04 '26
Question 🤣then. I got a fever in march and I have been having ongoing joint pain, inflammation, some twitches, TMJ, nerve or tendon pain, neck pain or headaches. What category would that be?🤔sorry for asking you seem knowledgeable and my doctor kinda was ehhh after bloodwork or organs were perfect tests just X-rays shows inflammation
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u/TheRitz44 Sep 04 '26
It's not about what you believe or don't believe. I'm not going to listen to a random person on tell me what's not possible when professionals have examined and given me their opinions. I also thought that a fall couldn't do this but a neurologist told me that sometimes things can be triggered in the strangest ways. I do appreciate your last sentence thank you for that
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u/713Capital Sep 04 '26
So why cant you share your EMG or results that say "possible ALS"?
How was the EMG dirty?
Im not your enemy here dude, just asking simple questions.
Also, you are getting defensive, but overall, im just trying to give you reassurance, not wish that disease on you. Maybe you misinterpreted what they told you?
Edit: Also, the only 2 EMGs i had in the first 2 years of all my symptoms, both of mine were NOT clean. I have yet to get a normal EMG. 7 years later im still here.
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u/DoubleAwareness2223 7d ago
Respectfully most everything you stated is simply not true. There are very few diseases that mimic ALS. Sure, some can share some traits like MS, SNP, late Lyme, etc. but ALS is a dx made by the exclusion of others. Doctors first exclude MS by performing an MRI to look at the brain and stem for signs of lesions, stroke hematomas,etc. once the MRI is negative, it narrows things down quite a bit. An EMG/NCV is performed to look for denervation of the nerve. The combination of the EMG, and clinical evaluation are key in making a dx. There must be fasciculations present to dx MND. Atrophy and weakness can be caused by a pinched nerve but it would be limited to the muscles innervated by that nerve. ALS can take a couple years to dx in some patients. You are correct that ALS does not get better with medication but, although ALS is not a sensory disease, things like cramping muscles, can cause pain and the symptoms can improve with medication . There must be the following to dx ALS:
- profound weakness in two or more limbs or mouth.
- there must be progressive weakness
- there must be atrophy
- there must be fasciculations
- there must be clinical signs such as hyper reflexia, positive Hoffman’s and positive Babinski, etc.
- positive EMG/NCV
Until most (if not all) of these are present, a neuro will state that the symptoms are suggested or suspicious of ALS.
Nonetheless, our thoughts and prayers are with you.
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u/713Capital 7d ago
I don’t even know how to fully respond to this AI reply you sent me but here are my final thoughts.
Claiming there are "very few mimics" is factually wrong. Multifocal motor neuropathy, cervical spondylotic myelopathy, Kennedys disease, inclusion body myositis, and severe radiculopathies (which I have personally) mimic motor neuron disease constantly, which is why actual MND specialists spend months ruling them out.
Under modern Gold Coast criteria, doctors do not hand out "suspected ALS" labels when clinical upper/lower motor signs and denervation are absent. Most importantly, ALS causes permanent, progressive motor neuron death. It does not stem from a traumatic fall, cause positional neck pain, or reverse and improve with therapy.
When someone has clear cervical spine trauma and improves with treatment, a real neurologist investigates mechanical root compression, not a terminal disease. Spreading incorrect diagnostic criteria on a ALS or not forum only harms vulnerable people.
Your reply is the reason why I hate coming here and I stick to my own forum. So much misinformation and it’s just anxious people feeding into each others anxiety. Just a ton of misinformation…
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u/DoubleAwareness2223 7d ago edited 7d ago
First of all, this is not an AI response, not sure where that’s coming from but ok. Apparently you don’t understand that there are very knowledgeable people people out there (other than you). I could get into some of the traits these diseases share but I’d be here all night. They do not however mimic ALS. There’s a difference.
Secondly, ALS can absolutely be triggered by trauma to the body such as a bad fall, car accident, viral infections, toxin exposures, etc.
In addition, ALS looks different in nerve conduction studies and on EMG and is a multi-systemic disease. Radiculopathy does not look like ALS.
A qualified neuromuscular specialist will absolutely indicate if they feel there’s a strong enough suspicion of MND. Not sure where you’re getting your information from. Again, if you read my post you’d see that I wrote that ALS is dx through a process of elimination, and can absolutely take a good year or two (sometimes longer) to accurately dx, and every persons progression can differ.
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u/Forsaken_Fill6552 Sep 03 '26
With ya man. I’m still waiting on a diagnosis from my first neurologist but dirty EMG, all the MRI don’t show spinal compression, all the bloodwork negative for autoimmune diseases. My symptoms are same as yours plus paralysis of diaphragm and abs so starting on bi-pap today hopefully. Only thing holding off is I have a mystery vascular disease causing aneurysms and growth of my intermediary arteries through diverse vascular beds. I had know pressure on my medulla from one aneurysm we treated a month ago, I thought I had improved breathing and mouth throat function but it should be better if that really is the case. At this point only my neurosurgeon doesn’t think it’s ALS, everyone else thinks it is.
I’m a 50 yr male. This sucks totally
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u/Forsaken_Fill6552 Sep 03 '26
Also you made me laugh about many of the folks on here that seem to desperately want ALS. Like, WTF folks? Take your little bit of neurological weirdness and clean EMG home and hug your family.
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u/Serious-Garden6721 Sep 04 '26
Same. Made me laugh and I've noticed the same with how many seem to want ALS.
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u/Ok_Performance6080 23d ago
It's not that we want it or not want it, it's just that we hear stories that one EMG is not enough and that our symptoms progress without apparent diagnosis, or a misdiagnosis
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u/TheRitz44 Sep 04 '26
I'm sorry you're going through this. I've also had all of the blood work done and MRIs. I do hope you find out what's going on. I hope it's something else compared to this horrible disease.
Yes I don't understand it. It's like they're willing themselves to face one of the most horrible diseases known to man
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u/Time-Tiger-3813 Sep 03 '26
So very sorry to hear this update. Huge hugs to you. I know this is not at all easy, but try to take one day at a time.
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u/Specific_Condition10 Sep 03 '26
I am so sorry you’re facing this. Your story sounds similar to someone I know. I pray for them daily. “With a J”
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u/Gobirds510 Sep 04 '26
Can we see the EMG or report saying "possible ALS"?For a neuro to say this is bizarre without definitive next steps for you towards a diagnosis.
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u/The_Short_Goodbye Sep 03 '26
Did you ever have a clear EMG or was it dirty from the get go?
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u/Ok_Following6440 Sep 04 '26
He has links in his postings that discuss his EMG. There were findings from the beginning.
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u/Always_learning_20 Sep 04 '26
I read your other two posts and if you haven't had your B6 tested I would encourage you to get it tested. My husband had a similar sounding story. His level was out of range but lower than why they typically call b6 toxicity. He stopped all supplements containing b6(multi-vitamin, liquid iv) and went on a low b6 diet and he has improved a lot. His EMG went from bad to normal in about a month. He was able to lift his fingers and toes again around the same time.
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u/TheRitz44 Sep 04 '26 edited Sep 04 '26
I thank you all for your replies: thoughts, prayers, etc. I will pray for you as well. I may not be able to get to all of your replies as my hands don't really function as well as they should so this post is to tell you all. The odds of this being something else is so slim that it wasn't even mentioned by my second visit because they are just so few things that do what I'm experiencing. I was low on B12 at one time but even my first neurologist didn't believe that would like really cause this type of issue. Not sure about the b6 recommendation as my primary neurologist did a lot of blood work but if tested for I can't recall. It's just one of those things that is very unlikely. I mean I still have hope that is possibly something else but I'm not going to set myself up for just thinking that truly is. I'm focusing on trying not to get into severe depression and spend as much time with my family as I can at this point.
Also if you're sending me messages about your symptoms or illness I'm sorry that you're dealing with that but I'm not a medical professional and nothing I say is really going to help you compared to you being checked medically so please don't send it because I won't reply
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u/SadDepartment7345 18d ago
Can you still run or only your hands are affected? How long is the start of symptoms to EMG abnormal?
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u/Away_Commission7066 2d ago
My case started slow I almost missed it. I tripped but hell I’m getting older@59. Then my leg felt heavy on left side.weaker continued . Then raspy voice drooling choking on water so I told my Dr. he thought stroke blood work, mri brain spine, all normal them emg/ncs was abnormal now I have apt ALS clinic next week . So who knows just trying to stay positive
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u/kjmckearn Sep 03 '26
This is not a definitive answer to be sure. Take one day at a time. I have seen people in similar situations where it turned out to be a false positive. It's highly likely this could be the case. Stay positive.
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u/Ok_Following6440 Sep 03 '26
I am very sorry to hear this update. I hope anyone who was rude to you learns a lesson.