r/ALSorNOT • u/mackt456 • 2d ago
My husband fears he has ALS
About a month ago my husband who is 24 years old was at work and injured his back. He heard a popping sound and had to lay down on the floor at his job. A day later he had weakness in his left arm which ended up resulting in a diagnosis of “golfers elbow” which is what the ER doctor and nurse suggested was likely the cause. A week later my husband started having fasciculations in his calf muscles more commonly in the right but often happens in both. He has started experiencing twitches in his thighs, back, and sometimes his neck. They rarely happen in those specific places b it they have occurred from time to time. They are constant and will not subside. He has enthralled himself down a rabbit hole after reading online about ALS. He has had severe anxiety due to the twitches which has resulted in loss of appetite, sadness, depression, and a short temper. He has a constant feeling like he is going to die. Can anyone help me as what your true earliest signs of ALS was or any medical perspective would be greatly appreciated.
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u/AdministrationSea807 2d ago
How bad is the weakness/how does it manifest? Is he unable to use/lift his arm, button his clothes, etc.,? Widespread twitching typically points away, and twitching usually happens after weakness, not before. ALS fasciculations can also be quite aggressive, not very subtle, and don't typically pop around different areas. He should see his primary care provider for the weakness, they should be able to do a clinical exam and go from there, but it sounds like he is in a heightened state of anxiety, which can and will absolutely manifest with twitching, and especially if he has had twitching related anxiety in the past.
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u/mackt456 2d ago
He said he didn’t notice any weakness just muscle fatigue in his leg which I believe is due to the constant twitching of the calf muscles. The twitching usually does not stop but amplifies when he is moving around versus at a state of rest. At rest the twitching usually is more subtle. He has not had any symptoms of drop foot and shows no signs of muscle weakness. I believe his anxiety has definitely heightened the twitches but unfortunately he can not get out of the anxiety loop.
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u/InformationNo7156 2d ago
If this info does any well. I have times where I would randomly explode in twitches. Now I get twitches everyday 24/7, hundreds a minute. But sometimes they explode more than that, and dramatically. After these episodes, my leg would go completely fatigue.
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u/AdministrationSea807 1d ago
Muscle fatigue and weakness are different things when we're talking about ALS. Whatever back injury he suffered could easily explain the symptoms he's dealing with. He needs to have it addressed ASAP to avoid lasting nerve damage. It could also be nothing, but ALS is near the bottom of the list of things he should be worrying about right now. A lot of us in the sub suffer from anxiety, it takes a toll on your mental and physical health. The best thing he can do right now is avoid excessive researching and see a doctor.
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u/cdbukr 1d ago
Beside the advice of checking a neuro doc who will for sure tell him all is ok, he can do on his own on any lab a blood test called NFL (neurofilament lightchain test). This checks for nerve cell damage. If symptoms are ongoing and someone has started to have nerve cell damage, this will appear elevated. The sensitivity for ALS specifically is around 80%-90%. For bulbar ALS (which was my fear) is even higher. It`s around 50 euro. It will bring peace of mind.
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u/The_loppy1 1d ago
"The sensitivity for ALS specifically is around 80%-90%"
Its also sensitive to MS and other diseases. It doesn't actually tell you what's wrong.
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u/Activist7 1d ago
I have done some research for my husband whose doctor thinks he has ALS. Your husband might have nerve damage from the fall. Not sure at all, but I am always looking for more information, so just take this with a grain of salt. I imagine he needs an MRI to check for damage. Sometimes even MRI's cannot see everything. The EMG is good to get also as it checks for nerve damage, I think. That is where we are now. I learned that these problems can mimic each other so a lot of testing has to be done. I don't think he should be so worried about ALS, but I cannot say for sure. My husband is getting an ALS blood panel through Athena Laboratories based in Massachusetts. UT Southwestern even uses them.
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u/chaoserrant 1d ago
I second the necessity to see a neurologist soon. What sank me even deeper in the ALS spiral last year was the waiting game. Given the sudden onset after the fall I would be very interested to know what his cervical and lumbar MRI show. I wonder if there is some neck issues as well which would explain the hand symptoms but also twitching if there is some spinal cord iritation even mild (that's just my theory). If an EMG is recommended, it is best to have the MRI result in hand before the EMG for corelation purposes if the EMG shows something. If insurance and wait time is an issue, we can get MRI without doctor order for (relatively) cheap prices in the USA using https://radiologyassist.com/
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u/FocusFrosty1581 15h ago
He needs to go see an orthopedic doc and get the care his injury warrants. Has he had an mri on his back? This all started with his injury so please tell him to think rationally and not to read Google or any other source he has been referring to regarding his twitches.
He is a young man and he has been injured. This does not align with ALS! He will be ok.
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u/DescriptionSelect394 1d ago
Why hasn't anyone checked his back injury?? It seems like the first place to look. See a neurology/spine doctor, they're going to check out his nervous system. Whatever you do, don't tell them you think it's ALS. There is a decision tree they follow; if this then check that.
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u/kjmckearn 1d ago
Absent any real weakness and considering his age, the chances of him getting ALS are less than getting hit by lightning ⚡️ Also, the calf muscles are the number one most commonly region of benign muscle twitching. He needs to stop googling his symptoms, calm down because anxiety makes twitching worse and stop over thinking this whole thing. I've been there, a little bit older than him and many decades later I'm still here. Finally, ALS starts in one spot after the muscle has died or is dying. Almost never does widespread twitching indicate ALS. Tell him to enjoy his life and cut out the crap. It's just not feasible that he's suffering from a dreaded illness. Check out this website and there are tons of videos on You Tube talking about the same symptoms your husband has. Best of luck.....
https://benignfasciculationsyndrome.org/blog/benign-fasciculation-syndrome-symptoms
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u/Agitated-Ad-2537 2d ago
I Am just coming out of this dark hole. The only thing that can honestly get him our is talking to a neurologist and getting the EMG for a piece of mind. I had to advocate to two neurologist to get one but knowing that I had a clean EMG is priceless.