Status
Not open for further replies.

JenniferSex1

New member
Joined
Feb 23, 2015
Messages
5
Reason
Learn about ALS
Country
US
State
Michigan
City
Saline
Hi all,

I have been a bit of a lurker on here for the past two weeks or so. A month ago today, I started noticing a lot of myoclonic jerks (more so than normal) when I would go to sleep at night. It was just the jerks at night for a couple of days, which made it hard to sleep and I also had a strange "restless leg"-type sensation in both of my legs. I had a lot of jerkiness for about a week, with a few intermittent popping twitches in various areas throughout my body. Of course I went and googled my symptoms and began to fear ALS big-time. I went to my GP who said she wasn't sure what it was, possibly anxiety, and prescribed Valium. I then went and saw a neurologist, who was kind enough to get me in on a morning's notice (a minor miracle in and of itself, I think!). I had a neuro exam and blood work. My bloodwork revealed no thyroid issues, no vitamin deficiencies -- nada. (I was kind of hoping it would and that would be the problem solved!) I shared my ALS fears with the neuro, and he stated he felt it was extremely unlikely I had als, even more so after the exam (which he told me showed nothing unusual). He thought it was possibly tension and BFS. Since that neuro visit the jerking and buzzing sensations in my body have gone for the most part, however now I am "popping" twitches everywhere intermittently -- arms, legs, feet, thighs, shoulder blades, stomach, butt...everywhere. I also have pain in what I can best describe as my left wrist and the "webbed" area between the thumb and forefinger which seems to increase a bit with activity and my arms and legs seem to tire a bit more easily. I seem to be dropping little things a bit more with the left hand but I'm not sure if this is truly an increase or I am just more aware of any odd little symptom. I felt better for about two days after my neuro appointment and then the twitches started popping up everywhere and I felt like I was back to square one.

I have read the stickies and I am truly confused. Some say twitching alone is not an indicator of ALS, that you must have weakness as well. Then I see people state that they had twitching first and weakness and atrophy came afterwards. Or that they had an emg that was clean but a few months later another that was "dirty". I have not had an EMG but plan to ask my neurologist if having one would be reasonable.

I will be very honest with you all: I absolutely have anxiety and have all my life. I know the mind is a very powerful thing. I have a son who is six and a daughter who is two and I tear up at the thought of not seeing them grow up. I am crying as I write this and am desperately afraid. I see so many people on here who do in fact have ALS and how kind they are to answer questions and help others, and God bless you all for it. I have debated posting on here for awhile, but if anyone can give me any thoughts, advice, experience, I would be forever grateful. Thank you so much.

Jennifer
 
Forgot to add I am almost 33 years old and, obviously, female. :)
 
If you've read the sticky you know the pain you mention is not due to ALS. The twitches can come from many issues as you've been told so don't try to convince yourself it's due to ALS.

You realize that none of us are doctors, yes? But you're asking us to disagree with a Neuro who has examined you ... ? Ain't gonna happen.

Call your neuro back if you must and discuss the emg.
 
"I will be very honest with you all: I absolutely have anxiety and have all my life. I know the mind is a very powerful thing. I have a son who is six and a daughter who is two and I tear up at the thought of not seeing them grow up. I am crying as I write this and am desperately afraid."

PS. "JenniferSex1"? Come on... this isn't EHarmony dot Com.
 
Oh, absolutely. I meant no disrespect to any of you or my doctor. I'm not asking for anyone to disagree with him. I was just wondering if anyone had a similar experience and if it turned out to be ALS or something else entirely. I guess Part of my concern is based off of people reporting having had fine neuro exams then at a re-check something was found.
 
"I will be very honest with you all: I absolutely have anxiety and have all my life. I know the mind is a very powerful thing. I have a son who is six and a daughter who is two and I tear up at the thought of not seeing them grow up. I am crying as I write this and am desperately afraid."

PS. "JenniferSex1"? Come on... this isn't EHarmony dot Com.

My last name is Sexten. It's a username I use on most things since my full name isn't always accepted nor do I always want to share my full name with anyone, but since you're making fun of me, I felt the need to explain myself.
 
She's correcting her previous post, where she mistyped that she didn't always want to share her name with "anyone" -- clarifying that she meant "everyone."

Now if we can get back to ALS...

Jennifer, it is very unlikely from what you have described and with no clinical weakness or atrophy, the neuro would rightly question the need for an EMG, which is no picnic itself. BFS is the most likely culprit for your pops and it can trigger the sensation of pain as well. Then as you become aware of your extremities, they get tighter and you start dropping things. You had a couple of good days and then anxiety surfaced. Maybe Valium isn't the best answer -- it has its own side effects and is short-acting. You might discuss an antidepressant with your primary care doc for safer, longer-term relief. By all indications, you are OK. What the stickies say, ultimately, is that without weakness or atrophy, ALS is not going to be diagnosed. Focus on that. Hard.

These are some of the things I suggest trying: get a new pillow or adjust yours for more shoulder support, make sure your arms/feet are not getting crunched when you sleep, drink fruit juice, get a massage, go swimming, take a nature walk with your kids, phone (not text) a friend, visit a local nursing home and share some cheer, raise funds for a good cause, write a poem, do something that speaks to the calm you. I know she is in there from the way that you write. I'm not patronizing. Peace and strength to you.
 
Jennifer, I agree with lgelb. I don't have ALS, but my wife did. I have restless legs so severe that it is actually restless body syndrome. Valium was used to treat stress at the beginning, then Klonopin and finally we've got my bouncing under control with Mirapex.

Get a second opinion to try to pin down what the problem might be. But don't worry about ALS.
 
>My last name is Sexten. It's a username I use on most things since my full name isn't always accepted nor do I always want to share my full name with anyone, but since you're making fun of me, I felt the need to explain myself.

:) got my attention !

>Get a second opinion to try to pin down what the problem might be. But don't worry about ALS.

Ditto that!
 
Status
Not open for further replies.
Back
Top