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Author Topic: ALS, need help to get over fear  (Read 350 times)

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Offline Paul77

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ALS, need help to get over fear
« on: August 30, 2014, 09:31:37 AM »
Hello,
This is my first post on this site because I've hit rock bottom. I'm a 36 yo otherwise healthy male.
For the past 2 months I've been dealing with ALS fears.
It started with stiffness in my fingers on my right hand which has gotten worse over time, and I also feel my speech is impaired (tongue feels weird and I hear myself lisping). My fingers have started to feel crippled and extremely awkward. My doctor said its not ALS,  but my psychologist says i should follow up with my neuro to ease my mind (appointment in 2 weeks).

The psychologist has been helping a little but all went south last night. I was speaking to someone who's father has ALS. It turns out his initial symptom was carpel tunnel like, basically everything that I've been feeling. He didn't have actual weakness in the beginning, he was actually still weight training through it. Hearing this confirmed that my fear is real.
I feel completely lost now. All my progress and efforts with treatment down the drain.
I'm simply scared to death, never so much in my entire life. My mind is telling me I have ALS.

Any help with coping techniques would be appreciated?
I just don't know what to do anymore. Breathing and meditation are not helping at all.
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Offline Roman

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Re: ALS, need help to get over fear
« Reply #1 on: August 30, 2014, 10:19:52 AM »
Hey there you actually have a better chance of hitting the lottery there are only 5600 new cases a year in this country, 2 out of every 100000 ppl. Have you had an emg that will rule it out or at least distinguish between als or carpel tunnel. I struggle with this as well after 7 neuro drs 2 of which were als specialists 2emgs MRIs ct scans it boiled down to a real bad neck and carpel tunnel. Don't worry itself to death over it wit to see what the neuro says take it from me u don't want to go down this road.
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Offline Paul77

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Re: ALS, need help to get over fear
« Reply #2 on: August 30, 2014, 10:26:56 AM »
Hi Roman, 
I have not seen the neuro since my symptoms started but I did have an EMG last year for other reasons which did not show anything. To my knowledge this disease can show up over night which makes me wonder if I need another EMG.
To be honest I was doing better before I heard the symptoms of my friend's father.

What was your saving grace? How did you get through it?
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Offline Roman

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Re: ALS, need help to get over fear
« Reply #3 on: August 30, 2014, 12:55:11 PM »
I learned to trust my drs and the tests. I'm curious did ur friends dad have an emg first or was just diagnosed with carpel tunnel with no emg. An emg is a very a nsitive tool and would have picked up Als in early stages
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Offline Paul77

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Re: ALS, need help to get over fear
« Reply #4 on: August 30, 2014, 01:15:37 PM »
I don't know the full story, but they checked for carpel tunnel first because his first symptoms weren't that bad, then did various other tests, then finally diagnosed. This was 10 years ago, i don't know if the EMG was the final test.

The part that is eating away at me is that the symptoms were as simple as carpel tunnel. He was into body building so I don't know if that makes a difference.
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Offline Roman

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Re: ALS, need help to get over fear
« Reply #5 on: August 30, 2014, 02:08:34 PM »
OK Paul if ur displaying symptoms of carpel tunnel when u see the neuro u can request an emg they can def distinguish cp from Al's the needle stick portion of the emg will tell that I'm willing to o wager ur friends dad didn't get an emg right away so that's why carpel tunnel was thought for so long then the weakness happened but I say ur fine have you lost from me motor skills I.e. buttoning shirts opening water bottles u didn't say crampiness in hands happens could be ct or arthritis or a thousand other things don't worry
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Offline Paul77

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Re: ALS, need help to get over fear
« Reply #6 on: August 30, 2014, 02:18:45 PM »
My motor skills are there, but just seem very awkward. My fingers are constantly stiff,tight and sore. I guess I'll just have to wait for my appointment.
Thanks for talking to me about it. Sometimes just talking helps.
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Offline bearsfb66

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Re: ALS, need help to get over fear
« Reply #7 on: August 30, 2014, 04:45:54 PM »
Also just to add you have to realize your friends father could have early symptoms of ALS that mimic carpel tunnel but in a short period of time he would have weakness and muscle loss. I'm 30 and a weightlifter and fear I have ALS. One of the big things reminded to me is in ALS I would start seeing muscle weakness and muscle loss, that is just how the disease works. Your friend is also recalling his fathers initial symptoms from 10 years ago and I'm sure other issues were there just not something that is in his memory 10 years later. Look for things to remind you that you are fine instead of why you might have ALS. It helps me.....I just ran for 40 minutes with no issues. I don't think if I had ALS I could do that or at least I would be having difficulty completing my run.
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Offline fishmanpa

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Re: ALS, need help to get over fear
« Reply #8 on: August 30, 2014, 05:15:48 PM »
Sometimes straight up logic can help.

FACT: You have a .002% chance of getting ALS in your lifetime (average lifespan is 70+ years) That extrapolates to even a lesser chance. 

There are thousands of other life changing events that stand a better chance of happening. ALS just isn't one of them.

Positive thoughts
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"Eat. Drink. Enjoy the work you do. Be thankful for the blessings in your life. Live. Love and seek out the things that bring your heart joy. The rest doesn't matter!."  King Solomon.

Offline Paul77

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Re: ALS, need help to get over fear
« Reply #9 on: August 30, 2014, 06:47:23 PM »
Some good points, thanks for that. I'll try to focus on good positive stuff.
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Offline Paul77

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Re: ALS, need help to get over fear
« Reply #10 on: August 31, 2014, 10:50:18 AM »
Woke up to what feels like a crippled hand, really freaking me out...  :(
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