Scared absolutely senseless

[The Trombonist]

Hello, I am currently 22 year old Music education major. I'm sorry to bother anyone, but I have recently fallen into a near constant fear of als. It all started when my arms felt weak. One night it was seriously difficult to hold my phone. It lasted for quite awhile so I decided to schedule an appointment with a neurologist. I couldn't go see my family doctor because of the distance and all GP's had packed schedules in my area. I also had a benign brain lesion on my brain stem as a child that went away on its own. The nuerologist did a NCV and blood work for myasthenia gravis and scheduled a mri. The bloodwork came back fine and the nurse called me to say that nothing urgent was found on the mri and that the doctor will discuss the findings on my next appointment. went a week and a half and did not experience any new symptoms. One day I noticed a dent in my hand that was not present in the other. A week later I noticed that my finger will move uncontrollably up and down if I lightly move them towards my palm. I did a bunch of strength and realized that my foot shakes if I hold it in the air while standing on the other foot. I also get random pains (including the same one I felt in my legs the day of the NCV). They move from my elbow to my pinky and knees down to my feet. It can vary by the hour. I also get wrinkly fingers with water, and my palms do not sweat. The wrinkles get worse after I touch something. Maybe I'm being too observant but I definitely know that the hand shaking is not in my head. It can get pretty violent. I haven't felt the weakness since the first neurologist appointment. I see him for the first time in six weeks friday. I'm really scared and really need someone to give me some advice on what this could be. I don't want to be a burden on anyone....

 

[The Trombonist]

Someone please comment. I'm really scared

 

[dalvin]

Go read the stickies at the top of this forum. It's obvious from your post that you haven't

 

[The Trombonist]

So this doesn't sound like anyone else's symptoms?

 

[skipper66]

Please read all the stickies several times over and over. Then please don't worry about ALS at this point. There could be many things going on with you other then that. Worry about it is just going to make your anxiety worse and cause more symptoms. The symptoms you are posting don't seem to me to be ALS related. We aren't doctors so we aren't qualified to tell you what else you might have. Do something that relaxes you and stay off of here and Dr. Google. Wait patiently for your next Dr's appointment. In the meantime make sure you avoid caffeine and keep your body hydrated with lots of water. Listen to music or do whatever you can to relax.

 

[skipper66]

No, it doesn't sound like any one's symptoms that I heard of in regards to ALS. Read the stickies again!

 

[The Trombonist]

Thank you all. I appreciate you spending time replying. Have a nice day

 

[AfraidButNotAlone]

May God Bless you and keep you close to Him.

 

[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 ...

.

 

[The Trombonist]

So I saw the nuero and asides from a few very small lesions, nothing was out of the ordinary. He said I should be fine and told me to see a psychologist. He did not do an emg and said that I do not need to follow up. So that's good news He specifically said that I do not have als and to only come back if I develop more symptoms.

 

[skipper66]

That is fantastic. I am so happy for you. Wishing you the best of luck with everything. Thanks for letting us know and if you don't mind please keep us in your prayers. Kim

 

[The Trombonist]

I'll pray for you guys every night. The fear alone was too much, I couldn't even imagine what you're going through right now. I wish you the best of luck. I'm going to go schedule a psychologist to take care of this anxiety. I keep having bouts of not believing the doctor, with is a sign of anxiety. I wish he would have done an emg, but I guess he didn't need to! When I graduate, I'm going to donate to this cause.

 

[lgelb]

Everything you've mentioned could be simple dehydration/mediocre diet. I'd make sure fluid/nutrition intake is up to par. Best of luck.

 

[Mediasmart]

I am always amazed at folks who are scared to death they have ALS and then argue that they have it. Not saying our music educator falls into that camp precisely but the number of folks who can't take no or yes for an answer is staggering.

 

[MaxEidswick]

Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum.

You asked, we answered, so please move on.

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!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...