Young Mommy... Please offer your advice!

[TeresaElizabeth]

Hello!
First of all I would like to tell you guys how much I appreciate your advice! I have been to a neuropshologist who has pretty much told me that I'm fine and my twitching is anxiety related. My fear however has stemmed from the fact that I've read way to many posts on clean EMG's and als diagnosed. I've read so many conflicting posts and I get worried bc my first emg was only about a month into my onset of twitching.

With all that being said I'm going to tell you how this all started...
July 26th I ended up with horrible food poisoning... Late that day my finger started to twitch. I brushed it off at first... It only lasted a few seconds then it stopped it happened two more times that day which made me consult dr. Google. And what came up? Als, Ms, Parkinson's, or anxiety. By this time I started to twitch all over and bc of some numbness u had convinced myself I had MS. I had two panic attacks which ended up with a visit to the neurologist. From the time I got sick to the time I went to the neurologist I lost 4lbs. I went from 136 to 132... The dr looked at my MRI from one of my ER trips and found 2 or 3 white matter leisions. He said that they weren't in places MS is typically found so he wasn't concerned but wanted to do a spinal mri and VEP. Those came back normal so he wanted to do a spinal tap. My spinal tap came back normal but I ended up with a killer lumbar puncture headache which pretty much left me bed ridden for a week... I ended up back in the hospital and had to have a blood patch done. After this I went from 132-127 and have pretty much stayed there give or take a pound or two.
All this time my twitching hasn't stopped, so I brought up another fear I had ALS he said that he would do an EMG but he didn't think I needed one. I insisted bc I had brisk reflexes and twitching. He did my EMG and it was clean as a whistle he tested all of my left side and most of my right as well as my para spinal. There were no fasics or fibs... And no sign of lmn.
I was ok with that for about a day then I got a lump in my throat and felt as though I could have choked on water... ( I didn't cough but it felt like it almost went down the wrong way ) this has happened twice so I insisted that he emg my tongue and bulbar region...he did it and yet again nothing... There was nothing in my tongue, jaw, temporal muscle, or pretty much any where. He even tapped my muscle to try to stimulate a response... Nothing. I've had tons of blood work which was all normal. What's going on with me?!

The reason I am here is bc this is where my fear started...

Could I have gone to do my emg to early?!

Can these almost choking like experiences be bulbar and it not be picked up on emg?!

I'm only 27... Should I be worried?! I know my dr has reassured me I don't have ALS... I know I should listen to him but my fear started here...

Another question if I did have bulbar would my emg of that region picked it up?!

Thank you for your help in advance.

 

[TeresaElizabeth]

I just want to say that I do appreciate any advice. I guess I was just hoping for your opinions... My paranoia started from me lurking on this website. And I figured since some of y'all are dealing with this first hand you could shed some light on my situation. Would mine be one of those rare clean-emg als diagnosed?!

 

[vickim]

Please believe your dr. He is educated, trained and experienced, we are not. Talk to your gp about your fears and see if he can help. You were given the all clear, so go celebrate and enjoy. I wish you peace.

 

[Tokahfang]

"My fear however has stemmed from the fact that I've read way to many posts on clean EMG's and als diagnosed." - TeresaElizabeth

You summed it up succinctly, TE. What you are suffering from is fear, and probably BFS, things that often go hand in hand. What you describe is a pretty classic anxious BFS experience, including the weight loss. Your docs are sure you are free of major neuro diseases, your job now is to live in that reality. That's easier said than done, for sure, but it is the course you must take.

It helps if you stop staring at and evaluating your symptoms, reading about them, etc and instead sink yourself into something very different. Get into a new book series, volunteer gig, hobby, whatever it takes. Health anxiety is like an addiction, you need to fill that time in your life with something.

Having realized that reading here caused your fear, you might want to start by avoiding this specific and this kind of place. Take care of yourself, and go in peace.

 

[TeresaElizabeth]

Beky! I do appreciate your response! Thank you so much and my symptoms do sound a lot like BFS, I try to remind myself that but then I get another symptoms that bring me back to ALS. Like my almost choking, almost biting my tongue, a new twitch, and tripping. ( I've always been clumsy... But then I think "oh crap that's foot drop" which I can still walk on my toes and heels just fine ). I guess my point coming here for help was bc this was where my fear started esp. With those " clean emg bulbar diagnosed" comments. And I guess I thought that maybe telling y'all my symptoms would help me get over this fear.

 

[goolia75]

Teresa- I worried myself sick with the thought of having ALS a couple of months ago. During that time period, I lost almost 20 lbs in a 3 week period. I wasn't eating much and was stressing myself sick with worry. I had (and still have) full body twitching and perceived weakness in my arms and legs. I went to a neurologist who did a physical exam and said, "congratulations, you do not have ALS. Go live your life". It was a huge weight off my shoulders to hear that. Since then I have not worried.

I actually gained all the weight back that I lost, and then some. :wink: I still twitch, all day everyday. Twitching is the first thing my body does when I wake up in the morning. I have twitched in every muscle of my body, including my tongue, hundreds of times a day. I still feel muscle weakness, cramping, and stiffness most of the time. I was also told I have brisk reflexes. I even tested positive for Hoffman's reflex in my right hand. I still do not have ALS.

I don't know what is going on with me, but I no longer stress or worry over it. If a neurologist cleared you, you are fine. Don't spend all day looking in a mirror comparing your muscles or sticking out your tongue, standing on the scale, worrying about every lb lost, or constantly testing your muscle strength (which by the way will just lead to more muscle fatigue and cramping). A lump in the throat is very common with anxiety. I get the lump all the time. In fact, I had problems with it for weeks on end several years ago.

People twitch, some more than others. People bite their tongues (I have scars on my cheeks from all the bites through the years). Try to relax and surround yourself with what you enjoy in life, like your family. Also, stay off ALS websites as they will not help your anxiety!

 

[TeresaElizabeth]

Lol. It's funny as a fellow "als-achondriac" you know how we do those darn strength tests and look to make sure that our muscles arent weak or that our tongues haven't atrophied! I swear i was testimg my thumb strengh to the point my thumb and forearm hurt so badly. I know I should stay away...but I guess I just wanted to hear it from people who have lived through it.... I guess hearing these things from y'all helps! I really do appreciated your response and thanks!

 

[TeresaElizabeth]

Thank you Vicki!
I do appreciate that... I get that y'all aren't trained but y'all have lived through it... And idk it helps. My fear is that whole clean emg bulbar fear....

 

[hjlindley]

The 1st sign of ALS is not twitching, but weakness. I did not start twitching until 3 or 4 years into the disease process. I started with weakness in my hand and my left ankle, and serious leg cramps. But if you're not weak and you could do everything you could do before and the neurologist said to forget about it, do so.

 

[TeresaElizabeth]

Thank you. Hjlindey... I know now that if my twitches were in fact ALS twitches that My emg would have shown something.
I guess I was just scared bc of those clean emg bulbar posts. But I even had my bulbar area tested.... Idk. I do how ever appreciate your advice. I guess my main worry is "what if it was done to early?! "

 

[JEB1979]

The 1st sign of ALS is not twitching, but weakness. I did not start twitching until 3 or 4 years into the disease process. I started with weakness in my hand and my left ankle, and serious leg cramps. But if you're not weak and you could do everything you could do before and the neurologist said to forget about it, do so.

Had you already been diagnosed when you started twitching/fasciculations?

I've had fasciculations for the last five months, it's driving me crazy. Had an EMG which revealed neuropathy as well. Don't know what I have yet.

 

[TeresaElizabeth]

Good question!