I Mean No Disrespect But Have A Few ?'s

[Twiztidtragedy]

For the past month I've had Fasculations that started in my lips which didin't scare me just concerned me. Then I started getting fasculations in both my calves which last 24/7 It's like someone is playing a piano on my calves. at this point I started to google and it said BFS or ALS.

So For the past 5weeks both calves Play phantom of the opera all day and night. mostly when relaxed when i flex my calves the twitching stops but if im at rest the fasculations never rest. I do not have any weakness or atrophy or hyperflexia, I went and seen a neuro and he said he is 98% sure it's not A and ordered a EMG. I have to wait 3 weeks to get the EMG that was a week ago so I have 2 weeks left. I have had extreme Anxiety and have now developed kind of a Cold burning sensation in my legs. Im afraid to go to sleep at night Because im afraid when i wake up I wont be able to Walk.

Im 30 years old with 3 sons and am losing my mind With the Fear of ALS. I do have twitching in random areas aswell sometimes lips, arms, eye lids, feet etc.. anytime my oldest son or my wife does any research about fasculations it always points to ALS.

At this current time im also afraid that my EMG will be Abnormal Because of the fasculations and burning sensations. My grandfather by marriage Died 3 years ago from ALS and I mean no Disrespect from asking you all about my fasculations or the fear of the EMG and symptoms. If i have Offended Anyone I am Truly Sorry.

Thank You in Advance for any Replys Or Opinions.

 

[lgelb]

You have not presented anything to worry about in terms of ALS. But it might be a good time, while waiting for the [likely normal] EMG to reconsider what you eat, drink, exercise; how your sleep/stress is (with 3 sons and being 30, sounds like sound sleep might be taking a hit?); make sure you are stretching your legs out morning and before bed.

You could also try a few drops of magnesium lotion on the calves and ask about screening for RLS/PLMD.

Googling fascics and getting ALS is like Googling headaches and getting brain tumor.

If your anxiety is disabling, ask your doc about short-term help.

Best,
Laurie

 

[Twiztidtragedy]

Thank you very much for your quick reply I appreciate it. I will look into the magnesium lotion. as for the eating and sleep I'm on a alkaline diet 90% green and 10% chicken or fish no red meats. I take Ativan for anxiety and to sleep at night. My boys are well behaved and don't really cause to much stress they are worried about me.
i usally get 7-8hrs of sleep a night unless my anxiety about A gets to me then i maybe get 2-3hrs.

 

[Bestfriends14]

Nothing, absolutely nothing you've posted remotely resembles ALS in any way. Please listen to Laurie's advice, keep taking the atiivan (monitored by a doctor, of course), and don't lose sleep over "A" as you don't have it. Please continue to seek treatment for your anxiety. Best of luck to you.

 

[Clearwater AL]

Twiztidtragedy, as you wrote above...

"If i have Offended Anyone I am Truly Sorry."

Apparently you had some thought what you wrote may be offensive.

No, you were answered by a very knowledgeable member.

What will be offensive is if you continue posting new symptoms or matters
consisting of anxiety you yourself have admitted to... until after you have
that EMG.

Think about this... you're putting your anxiety onto your boys.

 

[Twiztidtragedy]

Thank you All for the replys. I do have a quick ? Since I have had these Fasculations for 5 weeks Isnt that timeframe long enough to develop weakness if ALS was Present? Me and my wife have been trying to research but have come up with no real answers. Thank You All

 

[lgelb]

It is not so much the timing of weakness relative to fasciculations that we would be concerned with, but the presence of weakness with or without fascics.

So again, I would focus on reasons that your legs could be bothering you, including the possibility that your mind has blown up some twitches and/or you have something like restless leg syndrome, which can be improved.

Your primary care doctor can help you sort this out, if you have an open mind. And you might tell your family to stand down from the Internet searches. The answers are much closer.

 

[Twiztidtragedy]

@ ♥ lgelb Should I be worried about the EMG? The fasculations are non stop unless im walking around or in a bath. My wife and everyone thinks They are BFS. But I cant stop thinking how something so consistent is Benign. Sorry for asking so many ?'s I am just really scared and the fear is starting to get really bad the closer i get to my EMG..

 

[Clearwater AL]

Once again...

What will be offensive is if you continue posting new symptoms or matters
consisting of anxiety you yourself have admitted to... until after you have
that EMG.

Know who is scared?

People with cancer, people having a heart attack, people having a stroke,
people about to lose their homes, people living in the path of a hurricane,
people sitting in a hospital with a loved one in the ER or ICU from a shooting...

you've been assured by very knowledgeable members you do not have ALS.

Even your own wife isn't convinced.

Time to get a hold of yourself... having an EMG is no big deal.

With your symptoms... it's really no big deal.

 

[lgelb]

As Al says, it is not going to be productive to post more symptoms/questions in advance of your EMG.

As for why benign twitching can be so consistent, it's simple -- it's called mind over matter. The more you twitch, the more you worry, and the more you twitch. The more power you give it, the more it takes.

As several of us have said, we don't see anything to worry about, beyond recommending that you be screened for RLS/PLMD. Why don't you focus on that -- much more likely to bear fruit.

 

[Twiztidtragedy]

Hello all, this is twiztids wife Maygen. Today we got the results of his EMG/NCV. Normal EMG but subtle problems that worry the Dr. So we are having a second EMG on March 6th 2019. He said he could not rule out ALS at this time but he did not believe that it is. So we are waiting to see "if symptoms progress" which is worrisome to say the least. I believe in my heart this is not going to happen to our family but hearing " it could be ALS " is a very scary thing to hear. He his so very scared and it is hard to console him when I too have fear for him. So I ask your thoughts on this and maybe some advice so the next 4 months are not hell for him and our family. Thank you all for your time CALS AND PALS

 

[Nikki J]

What are these subtle problems? The emg was normal you said. Confused

 

[Twiztidtragedy]

AS were we...basically the problems were so tiny they were unable to determine the presence of ALS . 98% sure its nothing but they want a follow up to see if it progresses. He said it was a reletively normal emg but with subtleties. We asked him to explain and he just repeated the same thing.

 

[Nikki J]

You are entitled to the report. If you post it with id info removed we might be able to comment. Is this a community neuro, academic general neuro, or neuromuscular doc?

 

[Twiztidtragedy]

So here are the results, we had to go get them. The Neuro that did his EMG is clinical Neurophysiology and specializes in EMG, and his Neuro is Neuromuscular.