Scared

[Magiga569]

Hi everyone,
I've posted a few times. My symptoms first started June '13 - twitching in my left arm, out of the blue. Since then my twitches have never gone away completely. Sometimes they are really bad - am having a bad episode now with twiches, pulses and flutters. In the past five days I've had them in my legs, feet, hands, side, butt, face and shoulder. They are worst when lying down, then when sitting. When I'm up and moving around, I don't feel them much (I think they're still there, but perhaps movement dulls the sensation?) I'm coming off a stretch of poor sleep (mostly because the twitches keep me awake, which makes me nervous). My legs feel tired and a little wobbly, and my left big toe feels weird.
I had a negative MRI a year ago August, as at that time I was also having numbness and tingling throughout my body. Sometimes my twitches aren't that bad and I actually feel good about things again. But this is a particularly bad spell and it makes me nervous. Sometimes I get so scared I feel sick.
I had a dr. appt. a couple weeks ago and mentioned my twitches - he asked a lot of questions - are they on just one side, what do they look like, etc? Of course at that time I was having no twitches so couldn't show him. He did mention fasiculations. I also started an SSRI at that time due to anxiety I've been having (not related to the twitches) but can find no mention of twitches as a side effect of the medication. I know EMG is the only conclusive test to rule out you know what, but am petrified to have it.
I have two kids, one of whom is disabled and one who has OCD. The thought of having this terrible disease and not being here to see them through their good and bad times devastates me. Though I know some of you may read this and think it's in my head or caused by anxiety, I assure you, I am not imagining these twitches and have had more stressful times in my life (deaths, no sleep for months, etc.) and never had this problem. I am able to type, brush my teeth, drive, eat, etc., with no problems, but when my legs feel like jelly at times or I get these new pulses that make my whole arm or other appendage twitch, I get so scared. Could it be the dreaded disease working its way up and this is only the beginning? Any help or reassurance would be much appreciated, and thank you for your support. I wish everyone reading this welll and thanks again

[physerv24]

Your symptoms certainly coincide with BFS. If your doctor didn't recommend an EMG, you should try and focus on your anxiety. Believe me, I know it is easier said than done.

[Magiga569]

Thank you physerv24. I know getting the test may give me peace of mind, butI didn't ask for one - if I got the news I couldn't bear to hear, I just don't think I could handle it. It's so hard not to read about you know what but I'm not letting myself because I get reassurance and then will read a story where the person did feel twitches or was able to run a marathon, etc., before being disagnosed, and it's terrifying. I also worry that it can't possibly be good for muscles to be twitching all the time, and since the heart is a muscle, what if that starts to twitch? For the third time in a matter of days, my legs have felt weak - once after walking, once after getting up in the middle of the night, and a few times today. My left big toe feels odd today and for some reason I keep finding myself flexing my toes on both feet up, but am able to keep them flat if I want. After I got up and felt weak earlier, I felt better a couple minutes later and was able to run through the rain to my car, but for every good sign I worry about the bad ones. Anyway, thanks for your reply and I hope you have a good day.

[physerv24]

No worries about the heart. It is an "involuntary" muscle, meaning it doesn't require a signal to beat and is not affected by BFS or any other neuromuscular problems. You are not alone with the full body twitching. Even though a lot of posters' twitching is confined to legs and feet, there are many others, including me, who twitch from head to toe. I cannot even count the number of twitches I have per minute and it has been constant for 6 straight months. I will note that as bad as it is on a normal day, it is far worse when I do not get enough sleep or am in a state of stress or anxiety.

If you can keep reminding yourself that you can still do your everyday tasks, although you may "perceive" yourself struggling, you are fine. As has been repeated many times on this forum, ALS is not about "feeling" it's about "failing".

Positive energy your way!

Vince

[Magiga569]

Thank you Vince! Sometimes I can (when my twitches are much less or hardly noticeable) at times like today it's harder, unfortunately. The hardest thing I find is I know lack of sleep makes it worse for me, but find it very hard to sleep when I'll have a twitch here, then there, then another place, so I start moving around, which keeps me awake...
Anyway, I'm sorry you are also having these symptoms, and I appreciate you taking the time to reassure me. I hope your symptoms will soon go away or at least subside. Best wishes.

[dolphin8808]

Mine sound exactly like yours!!! Come and go on spurts and I go to see a Neurologist tomorrow. Mine are all over body which from what I have heard is actually even Better!

It is very scary when you body does things that it just shouldn't. Frustrating too. I also suffer with anxiety so when I am twitchy, it will keep me up all night worrying and googling. Vicious cycle.

[Magiga569]

Sorry to hear you're going through this also dolphin8808. I hope tomorrow's appt. brings you some relief. When my twitches are minimal my anxiety is minimal - when they're nonstop or most of the day (especially night) I worry much more. Thanks for your reply and I hope you get some good answers!

[dolphin8808]

So true, when anxiety is down so is twitching, they def go,hand in hand! I will keep everyone posted thanks for the well wishes!!!

[dolphin8808]

I hate the nighttime ones the most, keep me awake at night

[nervoususer]

I also twitch head to toe - from my eyes to the bottom of my feet and everywhere in between. It's centered most currently in my right leg but I get them everywhere. I think twitches are so hard because you can't really ignore them - every time they happen you're reminded they are there. But at this point, you've been twitching for over a year - more than likely you would have had significant symptoms at this point if it was something really bad. An apt with a neuro for a clinical exam (not an EMG) could help put your mind at ease without going through extensive testing.

[dolphin8808]

I saw my nuero today and the cases of *** he has had was not to do with twitching, it has to do with major muscle weakness. For example, one man came in and would fall simply because he leg could no longer hold him up. Some get twitches, some do not but that is after the muscle weakness is presented. Also he said it is not a typical acute onset. One day you just don't wake up twitching as we do with BFS.

[Bibi]

[dolphin8808]