Wondering what I should do

an0thermike · 03-23-2012, 09:06 PM

Hi, this is my first post here. I'm 26 years old and I'm a bit scared. I haven't been diagnosed yet but I have some symptoms which really scare me. I have an appointment with a good Neuro next monday and another appointment for EMG testing on wednesday.

I know the only person that can diagnose me is a doctor, so I'm not gonna ask you guys if you think my symptoms are ALS. What I would like to know is how you deal with the anxiety and fear? How do you stay positive? I'm scared out of my mind by the prospect of being diagnosed with this disease, so I'd just like to know if you have any advice?

Thanks for any help you can give!

Ms. Pie · 03-23-2012, 09:18 PM

Do anything to get your mind off it. Be with your friends and loved ones. Get out in the fresh air. Go to church if you have a church or even if you don't. Don't freak out. Be productive. Watch funny movies. Write your feelings in a journal. Read a novel. Go for rides in the country. Talk to someone you trust. Eat something delicious. Have a beer. Go to the mall and make up stories about passers by. Go for walks. Go to the gym and Zumba or have a good workout. Meditate. Pray. Sing. Listen to good music. Cook for good friends. Relax!

trfogey · 03-23-2012, 09:24 PM

Come back after you've gotten a diagnosis of a serious medical problem.

Seriously.

Until you actually have a diagnosis, fear and anxiety are a waste of your time and energy. In fact, after you have a diagnosis, fear and anxiety are a waste of time and energy. If you're feeling fear and anxiety already and don't have a diagnosis yet, you should consider getting some treatment for the anxiety.

Letting fear and anxiety steal your life from you at your age is a tragedy -- or an idiocy. Especially fear and anxiety about diseases that would literally be one-in-a-million probabilities at your age.

Hope this helps.

HelenL · 03-23-2012, 09:28 PM

You seem like you have a good head on your shoulders, and your appt is coming up. Please try NOT to think about it until it's here. Remember that ALS is very rare, especially at your age, so unless you served in the military or have a family member with ALS, chances are... you won't have it. Good luck and keep us posted.

CathyP · 03-23-2012, 09:51 PM

Go back to living your life just like you did before any of these physical problems of yours started.

an0thermike · 03-23-2012, 11:17 PM

Thank you for the responses. I'll try to keep my head up until I have a reason not to. I'll keep you guys posted. Thanks again!

Magpuff · 03-24-2012, 10:37 AM

I love Ms. Pie's answer.....where is the "like"button?

notgivnup · 03-24-2012, 02:36 PM

***************Like************

Anja · 03-25-2012, 12:43 PM

What helps me: focussing on all things i still can do and/or thinking about creative solutions like how to do the dishes with 1 hand

Serious: 1st of all: enjoy THIS moment no matter what the outcome will be. Trust ur neurologist and share your thoughts &feelings. Enjoy the small things, breathe, relax, i know it's hard, but u have no choice. I consider myself luckey to not yet have the diagnoses yet, i might get it but it is not there yet and i enjoy that, when it comes i will deal with it at the moment it comes It makes no sense to think negative without knowing what's wrong. Also 1 tip 4 you: I allowe myself 1 time a day to write down all bad & ugly thoughts i can come up with in my journal for 15-30 minutes a day max at a set time. If i have them at other times i "tell" them to wait till tomorrow and i will look 4 stuff i love or makes me feel good like my dogs, music, funny websites, or whatever makes you feel good.

hope this helps! Take care!

Anja

an0thermike · 04-07-2012, 04:21 PM

Thank you for all the replys, they helped a bit. Lately I've been a little more depressed and no matter how hard I try, I find myself feeling pretty disheartened.

I am still in process of being diagnosed. I've had a twitch in my left eye for the last 4/5 months and back pain for the last 2 or 3. I was told I have a very small paracentral protrusion at my c5/c6, but after careful examination of my MRI, the neurosurgeon concluded it was just too small to be causing my symptoms. Just yesterday I had an MRI of my brain which came back normal. And about 2 weeks ago I had an EMG on my left arm because my hand shows atrophy. The EMG also came back normal and at the time I was relieved. About a week and a half ago though, I began having spasms, first I had one in my left arm which lasted a full 24 hours. Thankfully it went away. Then I started having spasms almost everywhere else. My left knee spasmed continuously for 3 days. I began taking daily supplements of magnesium and potassium, and that seemed to help a little bit. My spasms continue, but they're not quite as frequent. Thankfully, up to this point I only have a negligible weakness in my left pinch grip. The fatty part of my hand near my thumb has almost completely wasted away though, and using the hand hurts quite a bit because my tendons seem to be sore/weak.

Right now I'm doing my best to stay positive and just not think about things, but then I get a spasm that lasts for a few days... or my hand starts hurting... and it makes it really hard to focus. Really hard to go to work. Just really hard... I have another EMG scheduled for this week, this time its going to be a lot more thorough than just my left arm though. I'm also going to try to schedule a test for lyme disease.

Anyway thanks for listening for listening to me ramble. I'll try and stay as positive as I can.

johnnyliverpool1 · 04-07-2012, 06:14 PM

more chance of winning the lottery than gtting the dreaded...so buy a ticket and you wont win one and you wont lose the other.......johnny

Toto's Dorothy · 04-07-2012, 06:52 PM

Dear another,

You said the EMG was normal of the hand but it shows atrophy. Is this "your" perceived diagnosis. I ask this because you never mention the doctor making note of it (neurologist not neurosurgeon). Many times people perceive weakness when there really isn't any. If it is a matter of size, not one body is uniformed, not even body builders.

Anxiety can cause your mind to work overtime and can cause many symptoms like yours to be exacerbated. I especially like your phrase, "doing best to stay positive" in one sentence to be followed by, "........really hard" in the next. Your first EMG was normal, which is a good sign. I'm surprised by the surgeons response, but with a society such as ours, he's probably just covering his butt.

As for lymes test, its a blood test.

You said your EMG was this week, so Good Luck to you. And come back and share your results.

Johnny, here's my dollar, when are we going to win?

trfogey · 04-07-2012, 07:02 PM

So what did the neurologist who did the EMG on your left arm tell you about what was causing the atrophy in your hand? The EMG is only part of the picture -- what other symptoms did the neuro find (reflexes, muscle tone, weakness, etc.)? Can you snap your fingers with your left hand? Touch the left thumb to all of the other fingers, one at time?

Al · 04-07-2012, 07:23 PM

Doesn't sound like ALS to me.

AL

an0thermike · 04-07-2012, 07:29 PM

Hi trfogey, The Neuro who did the EMG noticed the atrophy but said that it was probably from a some kinda repetitive stress injury like carpal tunnel. i went to a good hand surgeon though and he said he couldn't find anything physically wrong with my hand, well aside from the atrophy. The neuro saw my twitches, but said they were probably due to stress, however my twitches were pretty minor at that time and since then have gotten a lot worse. He said my reflexes were a bit brisk, but not worrisome. I can touch my thumb to all my fingers. Though right now, its a bit painful because my tendons are sore/weak and my hands are stiff. Never been able to snap my fingers, so can't really answer that one.