New and scared (like all the others....)

[tiffskuirl]

I promised myself I wouldn't do this. I swore I would just relax but I can't and since I can't see the neurologist until the 11/21 I know that if I don't put this out there I will continue in the anxiety spiral that I am in. So here goes...

I am 34 yr old female. I have no history of illness other than PVC's which have been ruled benign. I do have health anxiety and I'm putting that out there but I hate that people automatically assume that because of that "it's all in my head" (and it might be...I hope it is...but I'm still ridiculously scared and confused). So let's get to what's bothering me. I've had twitches before and never paid them any mind. I get one by my left ribcage/breast area all the time. But meh...whatever, right? About a month or two ago I started to notice my arms felt funny. Like they were shaking. There is no visible shaking but it FEELS like I am in isometric contraction. You know, that shaky feeling in your abs when you do a plank? Like that, but all over. Again, I didn't think much of it. About a week or so ago I started to notice that my left hand, arm and leg were twitching. I had been drinking the day prior (love weddings lol!) and just chalked it up to dehydration. The thing is...they didn't go away. Now here I am still twitching and starting to notice other things. THe twitches happen all over but I'd say 90% are in my left leg. I get a few in my left arm/hand and some throughout the rest of my body but mostly in my left leg. I don't have clinical weakness but I sure do have tons of perceived weakness and muscle fatigue. I live upstairs in a two family home and the stairs lately are causing my legs to burn. I'm also experiencing an odd sleep disturbance where I wake up about 20-30 minutes after falling asleep to feel like I'm vibrating. The best way I can describe it is if you put your hand on a lawnmower. The way you feel the vibrations through your body? That's what I feel. It goes away after a few minutes but it's freaky and scary. So I did what we should all not do. I googled. I spent all day yesterday and today lurking, reading, crying, obsessing (I'm nothing if not honest about my shortcomings...sigh). This is why I'm posting. I have to stop. I have to. I need to know if this even sounds remotely like ALS. Because I have googled myself into a frenzy.

I visited my GP yesterday she did bloodwork (all normal) and she prescribed ativan to help me sleep and it worked. I got my first decent nights sleep in I don't know how long. She hoped it would quell the twitching too but it has not. In fact today I feel even worse. I'm getting weird sensations in my leg, like it's just waking up from being asleep. That tickle, sensitive feeling after it "wakes up". I have that same feeling in the back of my left arm. I seem to notice that most of my symptoms are left sided, leg and hand. I have read that usually it's one limb at a time so it's confusing. I have also read that twitching isn't usually a presenting symptom (but then can find 20 stories contradicting that). I'm guess I'm just looking for some feedback from those of you who are more in the know until I can see the Dr and get some answers. I have a beautiful 2 yr old whom I live for and I cannot even function as her mother right now because I am so paralyzed with fear. Whatever this is that's bothering me I will face with dignity and grace but the limbo of waiting to figure it out is not sitting well with my control freak personality. Thank you in advance for any words of advice.

 

[tiffskuirl]

Let me add...I read all the stickies. More than once. And they are amazing. Thank you for them. They were very reassuring but I still can't shake the fear.

 

[TeresaElizabeth]

I know how you feel. I have the same fear but I'm trying to overcome it. I keep telling myself my arm twitching is benign and I don't need to worry but it's easier said than done. Don't let this consume you. Go to your dr. Let him draw the conclusions they will find something if there is something going on. I had 3 emgs and all were clean... My dr tapped each muscle while the needle was in it during my emg and he heard a whole lot of nothing. Stress and fear can manifest itself in a physical way and that is hard to accept. No one on here can diagnose you, you know that, but go to your dr. He can set your mind at ease. They know what they are talking about.

 

[Clearwater AL]

I've written before...

I think the problem many people have is... there are too many medical web sites that say there is NO definitive test to diagnose ALS. Well, if EMGs are... they should say so. Or say, "If you have more than one clean EMG... you don't have ALS." Too often they'll lead you into a mental whirlpool.

So, you are pretty much left to trust what a Neuro Doc says and maybe a 2nd opinion Neuro Doc says. Lighten up on the Google Med sites. And... dig deep for patience. The peace of mind you seek may take time.

 

[vickim]

We have all been in your shoes and worry will get you no where. All it will do is make things worse. You have about a month until your appt. and that is not that long to wait in the whole scheme of things. The stress you are causing yourself will not change the outcome good or bad, so try and relax.

I waited 5 years to get my answers, waited 6 months before I even went to the dr. and after the first 18 months I stopped worrying and trying to figure it out myself and left it all up to the drs. I decided I was going to live my life and do what I could do and if I got answers fine and if I didn't I would live with it as my new normal. Fretting, searching and falling apart will not make the answers come any faster, so take a deep breath and be the mommy you need to be. The answers will come good or bad and you will do what you have to do then. I wish you peace.

 

[vickim]

my post went to moderation and will show up later. Sorry.