Not sure what's going on

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gtc123

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Hi everyone,

First of all just want to say thank you for what you guys do and provide everyone on this site. I'm so sorry for anyone who is impacted by this disease in any way.

I've read the sticky portion which was reassuring, but I'm still freaking out. Let me explain.. Around thanksgiving I was sleeping and woke up with a right hamstring cramp. Strange, but didn't think anything of it. About a week later I was out to eat and my hand was resting on the edge on the table and right wrist then cramped. Later that day when I stood up my left IT band cramped. I chalked it up to dehydration. Nothing happened for a bit until early January in bed my right heal cramped. I started to become concerned as I've never really cramped before, and noted something was going on.

A few days later my right calf twitched, and then the next day my left quad by my knee was twitching a ton. From then on, its been constant twitching throughout my body, so roughly 4 weeks straight now, non stop. Naturally I googled my symptoms and that probably made it all worse.

What I'm concerned about now is my left arm/hand. I'm still twitching all over, but my left arm and hand just feel off. When I was holding a banana last night, my left hand started twitching (it never twitched before when I was engaged doing something, only at rest). For the past day when I've been using my left arm, my bicep has been kind of "burning". Something just doesn't seem right.

I went to my PCP yesterday and he said that my strength/ reflexes were reassuring. But he still referred me to a nuero, which I am going to next week.

I guess my question is, with the symptoms that I have (and from your guys experiences), should I be concerned? Has it happened before where there has been cramping in different spots, and then twitching all over, but then one spot (like my left hand/arm) starts feel off and weaker and twitching a lot more?

I forgot to note, I had trouble swallowing earlier in the year, went to a gastroenterologist, and got that checked. Nothing conclusive, possibly some spots with eoe, so I took a topical steroid for that. I know that this part has nothing to do with the others, but after a few symptoms my mind starts tying things together.

Any input would be greatly appreciated. Thank you so much for your time.
 

lgelb

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I can tell you not to be concerned, but you're seeing a neuro next week, who can tell you in person what s/he sees. What I can say is that ALS starts on one side, not two, and not in all muscles at once. And non-stop bodywide twitching is not how it presents.

Waking up with cramps/experiencing them with movement suggests that hydration and/or diet (electrolytes) might relate.

Best,
Laurie
 

gtc123

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Laurie,

Thank you so much for the reply, I really appreciate it. Another question, you mention that ALS usually starts on one side, not both. What if the twitching is predominately on the left side, in both the arm/hand and the leg. I know those are different muscle groups, but just wanted your input. My left hand just feels weak and whenever I hold something (banana, my phone, etc ) it starts to twitch/shake which really concerns me. I know ALS is about failing and not feeling, but I just have to wonder if this is the start and will get progressively worse with time.

My blood tests came back all normal. I'm very active and eat very healthy. I'm also 28 years old. I know the neuro will be able to answer these questions, but just wanted your opinions.

Thanks again for you help and input.
 

lgelb

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Again, twitching in itself is not how ALS "starts." Inability to do things is the hallmark. You can still lift and hold the banana, twitches, tremors or not. Holding it while you are twitching is even harder and takes more strength.

Stop back by after your neuro appointment.
 

gtc123

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Went to the neuro yesterday. He said that I had normal reflexes and my strength was good. He put in a request for me to have an EMG to try and figure out why my muscles keep twitching. EMG will happen next Friday.

What the neuro said was very reassuring, but what still concerns me is my left hand. The muscle twitches that happen all over my body, I don't know when or where they will occur (I only twitch when my body is at rest). That part is fine, I can deal with it even if it is extremely annoying. But with my left hand, the muscle between my thumb and pointer finger on the top of my hand twitches every single time I pick something up and hold something (sometimes strong twitches, sometimes it's subtle). It can cause my whole index finger to twitch when holding my phone. Should I be concerned with this? It's really worrying me. Yes, it is still just twitching. But this twitching it brought on by activity, not at random like the full body ones. Is it twitching because there is a muscle in there that is potentially weak, and it is compensating for that? Please let me know your thoughts.

Thank you.
 

ShiftKicker

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gtc, I'd reread Laurie's responses to you again. The neurologist is the person who examined you- knows your health history and examined you in person- they are the person you should be asking. Twitching is as common and nonspecific as coughing, and has just as many causes.
ALS has a very specific pattern of symptoms that you simply are not reporting. Please don't ask strangers on the internet to speculate for you any further. Your EMG will provide you reassurance, I am sure.
 

gtc123

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Just wanted to come back here and give an update after I got my EMG. Maybe it could help some other people. I was tested both of my left arm, left leg back and neck, 11 spots in total. Of the 11 spots, I had 1+ fasciculations noted in 9 of the muscles (the only 2 that didn't were my back and neck). No IA, Fib, PSW, Amp, Duration, PPP, or recruitment patterned registered, only fasiculations.

The neuros interpretation, "This is a mildly abnormal study. There is electrodiagnostic most consistent with benign fasciculations; there is no evidence of active denervation or reinnervation to suggest a degenerative process (e.g. MND). Clinically, the patient's normal strength, reflexes, and diffuse, rare fasciculations are consistent with benign fasciculation syndrome."

The neuro mentioned that other stuff would have showed up in the EMG besides fasciculations if it was potentially MND. I asked him about the difference between the twitches that are random throughout my body and my left hand where the muscles twitch upon activity, and he felt like there was no real difference and it was stemming from the same problem. He felt like there was no need for a follow up and that I will just have to learn to live with the condition. Mentioned maybe going to a psychologist could help with dealing with the symptoms and steering my thoughts in a positive direction. Regardless, I won't complain one bit with a BFS diagnosis.

Thank you guys for helping me through this worrying time. You guys are rockstars and warriors and I have the upmost respect for you.

God bless.
 

Nikki J

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Thank you for stopping back. Congratulations!

It sounds like your neuro gave great advice. A psychologist to help you deal with this if it continues to bother you is a sound idea.

Have a long and happy life
 
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