Please help. Extremely worried

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Jhn481101996

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Need help. Not really sure what’s happening to me. I’m 24 male first time on this site. Was wondering people’s opinion. I haven’t constant fasciculations in legs. Mainly calf’s with random thumps and hard fasciculations on quads and thighs. I have exercise fatigue and intolerance. I can still do everything as before just get tired quicker.

I saw a neurologist and we performed an EMG. It was during this Covid mess so appointments were wide open. And they didn’t see anything. They did both my legs my right arm and hand and my neck and my entire back. Didn’t see anything. I had slightly prolonged f wave latencies in my NCS but he said since I’m tall with long limbs that’s more than normal.

I went back for a 6/8 month follow up like he asked. He said I had good strength. No Hyperreflexia, no change in exam. I’ve gained weight from anxiety stress eating I think. Not really sure what’s happening to me. I have fasciculations all over my body. But calf’s are pretty regular if not 24/7. Thank you in advance. I have precamp feelings in calf’s. And arms sometimes. Neurologist thought benign fasciculations. Thank you for anyone in advance. I also have some stiffness in back of knees especially when locking legs out and propping them up for a long period of time.
 

KimT

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Fasciculations are very common and are non specific. Listen to your neurologist.

You can also try eliminating caffeine, getting a little more rest, and eating lots of fruit and veggies. Stress will make twitches worse. My neuro has fasciculations in both legs 24/7. He isn't worried.
 

Jhn481101996

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Thank you for your reply. I’m trying my best. I’ve also had briske reflexes and some other tremors and certain things. I’ve also had some drainage issues after eating and drinking not sure if it’s acid reflux related or what. I’m just concerned I’m a slow progressing form of MND.
 

Jhn481101996

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Does anyone else have any other advice?
 

Bestfriends14

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I guess the one piece of advice is to continue working with your doctor. This is an ALS forum only, so that is all we deal with. It is not a general health forum. You are not displaying ALS symptoms at all and that is a good thing.

Best of luck to you and stay safe.
 

Jhn481101996

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Thank you for your reply and kind words. I read the forums before posting and they both sounded exactly like me. Thank you for your help. My neurologist said he didn’t I had anything sinister happening because I had no progression in 7 months. I’m still worried I’m a special case. Thank you.
 

lgelb

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Not knowing what you look like, but hearing long limbs/tall and the issues you describe, esp. if limbs are long for height, you might want to make sure a connective tissue disorder can be ruled out. Agree that ALS is not in the picture.

Best,
Laurie
 

Jhn481101996

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Laurie I read some things you talked about in other posts. I'm worried I did my EMG too early. I did it around 3-4 weeks after symptom onset. And I'm experiencing more upper body twitching here lately. My neurologist thought it was bfs or cfs at worse. Not really sure. I get hard thumping twitching. Would love anymore advice. Please.
 

lgelb

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If nerves are damaged enough to cause symptoms, they are damaged enough to show up on an EMG. Since they did not, they are not.

So when we are speaking of symptomatic areas, the "too early" EMG is a myth. And, nerve damage in ALS also shows up as damage in areas that you think are fine.

I would really look at managing stress, sleep, diet, exercise, positioning support, and finding positive ways to spend your time, which definitely don't include hanging out here.
 

Jhn481101996

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So from your knowledge I’m sure you’ve seen a lot of people come and go. MND is not in my picture correct?
 

lgelb

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That is correct, in my view and in others' here.
 

Jhn481101996

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Laurie I wanted to ask you 1 last question. My calf’s twitch pretty much 24/7. Left way worse than right. My thighs also twitch. I also get random thumps all over. My neck and elbows have been newest places. I was tested for Lyme and a bunch of other things. My final question to you is how long can I be twitching before it’s really benign. My neuro said about 4-6 months if I’m twitching and have some cramping. But I’m going on 8 months of twitching. No cramps. Just some exercise intolerance and fatigue. Is 8 months long enough with twitching to be considered benign?
 

Nikki J

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yes. More than enough
 

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Agreed. It's worth trying a couple of drops of magnesium lotion on a major hot spot to see if it helps, as could stretching, bodywork, nutrition, hydration, stress management, etc. At this point, you are treating troublesome symptoms, not worried about disease.

Best,
Laurie
 

Jhn481101996

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Thank you for your quick reply. I guess I was concerned I was slow progressing since I’m so young. But my hope is that my twitching isn’t caused by denervation because my EMG was normal. Thank you. Sorry to bother you all. Anymore advice would be appreciated.
 
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