Waiting on second EMG, still scared

[miketeeveee]

Hello everyone, I'm new to the forums and just want to say, thanks to everyone who takes the time to address the issues of others. I'm currently experiencing some worrisome symptoms and would appreciate any feedback/advice. 32 year old, otherwise healthy male.

About six months ago, I was experiencing some tingling and numbness in my toes, and was referred to a neurologist by my primary (I have read the stickies and spoken with my neuro and understand that such sensory symptoms are NOT a symptom of ALS, that is just how this started out for me). Around the same time, I started developing twitching al over my body, but mostly in my right calf. The neuro wanted to rule out neuropathy because of the tingling and did an EMG in my right leg and lower back, the results of which he said were normal. During his exam though, he said he found that my reflexes were rather brisk and scheduled a follow-up.

I went back for a follow-up and he performed another physical exam and found that my reflexes were still brisk, and that I had some subtle "additional tone" in my left arm. I had an MRI of my cervical spine and a vitamin B blood test for the twitching, and both were normal.

So I saw my neuro again. He re-examined me and elaborated that my hyperreflexia is in my lower extremities, equal on both sides. He also said that when he re-examined my arms, there seemed to be improvement. He could see my anxiety and has scheduled another complete EMG because, in his words, "ALS could not be ruled out." I'd like to think that what he is saying is that it also can't be ruled IN, but is responding to my obvious anxiety to try to get some answers.

Lastly, I complained of a symptom that I wouldn't mind anyone's thoughts on. Several nights ago, I awoke and had some heaviness in my left arm--it didn't really feel like pins and needles or a cramp, just felt strange. I shook my arm and it returned to normal. Then it happened again another night, but much more extreme. Again it wasn't like pins and needles, my arm just felt extremely heavy, like my bicep was completely weak and useless, and I couldn't lift my arm at all for a few seconds, but shaking it and rubbing it eventually corrected it. I told my neuro and he said that this could be anything and didn't seem concerned unless it continued, but now of course I feel like my left bicep just feels "different." I can do a push up, lift a heavy jug, etc., but I just kind of can't shake this feeling and am terrified of the whole full-arm weakness moment again…

So, thanks for reading this long post, any thoughts are welcome. I'm pretty stressed.

 

[MaxEidswick]

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.

 

[GregK]

I awoke and had some heaviness in my left arm ... I shook my arm and it returned to normal.

ALS doesn't 'return to normal', we can't shake it off.
You slept on your arm, no big deal. You are lucky if that was the first time.

terrified of the whole full-arm weakness moment

Your arm fell asleep. Get a grip (no pun intended).

A normal EMG means no als.
Until your repeat emg, leave Google alone and work on your health anxiety problem.

 

[skipper66]

You are getting your self worked up unnecessarily at this point. Your EMG was normal which means no ALS. So, you are in the clear at this point. Stay off of Dr. Google. He is a quack! Work on your anxiety and see if things improve for you. I'd also log off here for now and do something to keep your mind and body busy until your next EMG. There isn't anything we can do for you. Take care, Kim

 

[miketeeveee]

Thank you all for responding. Your posts gave me some positive things to consider while I waited for my EMG. The results of my test were normal and as this is my second normal EMG, I am going to leave these fears behind me and seek treatment for my health-related anxiety. I wish you all the best and thank you sincerely for your consideration.

 

[skipper66]

You are most welcome. Best of luck to you. Glad the EMG was normal. GREAT NEWS!