trying to cope!

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ally

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Dear all......
Its definite ALS....Today i noticed that my left hand started fasciculate with a light touch and also later on the atrophied part begun fasciculating as well...
With the doctor believing is ALS i believe my fate is sealde...Im still in a panick sate..I just want to realise whats heppening...i just feel bad not for my self..But for others too.My family and especially my mother...I wish i could make it all go away...I wish but i cant do anything...I just wish i was like other kids my age...I just hope for strenght...Emotionally i am a mess so i do hope you understand...
Thank you
 
Did you get a confirmed diagnosis of ALS? Im having a difficult time understanding if that is what happened. Your post has confused me.
(It is pretty easy to do that... confuse me, that is...)
 
ally have you seeked a second opinion yet? Even if your original Dr's actions were perfectly normal, which they weren't, you absolutely need to get a second opinion. Please do so, and make sure it is a MND specialist.
 
Ally my husband has an atrophied right hand and forearm, foot drop in the rt. foot, and has fasciculations in both arms and legs, and he does not have ALS. He has CIDP. You need to see a specialist at a neuromuscular disorder clinic.
Laurel
 
thank you all so much....
You say i should see a specilist and not the neurologist im seing now...Maybe you are right..... but for what only to confirm it?im not sure i can go thru this...this emotional overflow...its too much....
thank you all for being here when i really need you
god bless all of you
 
First of all only any neurolgist or any Dr that is any good at all will encourage if not insist that you get a second opinion if they give you a serious diagnosis such as ALS. I know mine did, heck he set it up for me and he told me quote "never let a Dr tell you that you have terminal condition without getting a second opinion."

Second of all what if you go to a different Dr and they find something else, something less serious and treatable. Life is meant to be lived, there will be times that life events will knock you down but you need to get back up. You have given and up and are surrending and have decided that you are defeated and that your life is over without any fight what so ever. You came here for support and advice, our advice is get a second opinion because everything seems very strange to us and in our humble opinions does not add up to ALS. Get the second opinion the worst case scenario is that you find out you do have ALS which you already believe and the more likely scenario is that you find out you have 50 more years yet to live! I know what I would do, I hope you get the 2nd opinion!
 
Tedh5...im so touched by your words...i will try to get to the end of this...just now i have given up....sadly i feel powerless....having no one to talk to except the people in this forum who have been wonderfull...most of them are so admirable.....its just that it has taken me down...i fell like im old like im 80 years old,....just waiting ....hope im not troubling any of you or giving you bad energy or something...i really wouldnt want to do that..if im doing something bad to you with my negative thinking im really sorry i didnt intend to.
What worries me the most is the realisation the true realization of whats happening....i dont know if you understand what i mean...im talking about the time i really have to face things ....doe your emotional world get any better?
Is there a time after being devastated that you feel peaceful?
Thank you
 
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You will feel foolish if you see a specialist neurologist and get a diagnosis of something that could have been treated but you waited too long. What is worse? Living and wondering, or finding out for sure what is wrong. Get yourself together and go to another neurologist.

There is a lot of hope you don't have ALS! Find out!
 
Ally- im not trying to be rude, so please dont take it that way, but you didnt answer my question directly.
Have you gotten a confirmed diagnosis of ALS?
And please listen to these folks. They know what they are talking about because they are living it as we speak.
They are taking time out of their precious lives to try and councel you, so please, show them the respect they deserve by
following their advice. They deserve that much. And you know what, so do you! Ok, yes, it is possible that you do have ALS, but as the others have said, it is MORE possible that you have something else that may be completely treatable, and you are wasting your time and health on condeming yourself when youre not 100% sure.
The folks on here already have their diagnosis, you dont know for sure- please go out there and find out for sure before you throw in the towel. Heck, even if it ends up that you do have ALS, still dont throw in the towel.
Most people are given 2-5 years to live after a diagnosis. That means nothing. I know this because there are so many people on here that have outlived their "experation date" by multiple years. I also know because my own PALS has been around 5 years longer than he was supposed to be. Professor Stephen Hawking has had it for around 4o years.
My point being, even if it is ALS- there is still life after diagnosis. You just have to find your new spot in life.
I encourage you to read through old threads on here. You will see what i am talking about.
Just so you know- there are studies that show if someone gives up on themselves while ill, there lifespan tends to be shorter than those who have better "will power" or whatever you want to call it.
Its all a slap in the face right now and there is alot going on so you need to break it down into steps and then follow them.
Step number 1- get a confirmed diagnosis of ALS, and if you have, get a second opinion.
Then update us and we will try to guide you through it all.
Hang in there. this is very scarey, i know. but let me tell you this- either way, you have an opportunity to change your life. either you will be diagnosed with something, and you will be able to truly begin living life, or you wont have anything, but will see what could have been, and you will be able to truly live life. Youve got to find a new perspective. And we will help.
pheeewww. Thaaat took forever. sorry :)
 
I'm so confused did she get diagnosed with ALS or what? I find that hard to believe without a spinal tap, MRI, and all the fixin's we have all been privy to. I feel like I'm missing something. Anyone explain?
 
your guess is as good as mine. she wont answer it outright if she was diagnosed or not.
not sure what to believe. sometimes it gets hard to give people support when they act the way they do...
 
I really hate to get in the thread at this point, but ally contacted me about being her friend. I wrote her a PM, in which I told her I thought she needed to follow the advice you've all given to her, and then I spoke to her mainly in response to her post #7, concerning peace.

In a return PM, she said that she had calmed down, and was going to stay out of the forum for a bit, as although she loved the help and the people, she found she was becoming very stressed while focusing so much here and on her symptoms.

I hope that she will make plans to see another Neuro and get testing done. I have no idea if she actually has gotten a diagnosed of ALS. I do expect she will return. I hope so.
 
I've just read Ally's previous posts. Unless I'm missing something she was never told she has ALS. She did ask her doctor if she might have ALS, and her doctor said something like, that's what I want to rule out or that's one I want to rule out. She'd had an EMG earlier, but it didn't lead to the doctor believing at that time she had ALS. Disclaimer: This is what I'm getting from the prior posts, with a fast read. I still think she needs to listen to all of you who've told her to get another doc and tests...

Ally, if you read this thread again, this is what I think.
Ann
 
Ann- thanks for that update. i hope she does stay away- just so she doesnt freak herself out any more than she already has. i do, however, hope she returns to update us. And Ally, if you read this, and it ends up that you do have ALS/MND, then we will be here to support you. Alot of us are just confused right now because some of your posts werent clear. But dont think that us questioning you means that we wont be supportive. We will be.
 
We absolutely will in agreement with Liz. We just need the proper information to provide the proper support :)
 
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