Old 03-17-2013, 01:33 PM #1 (permalink)
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Default The hell that one goes threw before diagnosis.

I was wondering what patients do before they get diagnosis. Isn't it hell? I mean there are so many other things that mimic ALS and it must cost a lot of money how do people get a diagnosis? I've spent my entire life savings and lost all my family and friends. I have nothing to live for these symtpoms have stolen everything from me. Now diagnosis would only save some face mut my life is over just the same. I've moved out of my homeland so I could live a little longer on the money I have left. I'm no longer able to work but unable to get dissabilty or social security with no diagnosis. They say it's begnin hascilation syndrom but I have muscle atrophy and keep shakeing and insomnia. It's painfull to. I've lost everything. I can't possibly be the only one who has this happen to. Is there anybody out there that has lost everything and still has no diagnosis? I can't be the only one I'm just an average guy.
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Old 03-17-2013, 01:42 PM #2 (permalink)
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Default Re: The hell that one goes threw before diagnosis.

You were told BFS? How long have you been trying to get a diag nosis? What did your emgs say?
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Old 03-17-2013, 03:00 PM #3 (permalink)
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Default Re: The hell that one goes threw before diagnosis.

Hi,

Couldn't your symptoms be BFS as Vickim pointed out?
Why start worrying so much when you do not know for certain what is what you have and no reputable Neurologist has made a final diagnosis of your symptoms?

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Old 03-17-2013, 03:09 PM #4 (permalink)
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Default Re: The hell that one goes threw before diagnosis.

Why are you out of money? BFS is not a death sentence. It shouldn't get in your way at all. Also, if you have pain then you've got something in addition to BFS. Where are you from originally?
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Old 03-17-2013, 03:13 PM #5 (permalink)
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Default Re: The hell that one goes threw before diagnosis.

What did your doctor say was the cause of your atrophy and weakness?
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Old 03-17-2013, 03:16 PM #6 (permalink)
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Default Re: The hell that one goes threw before diagnosis.

Dear Alone,

I am very sorry you find yourself alone and saddened (and surprised) to hear you have exhausted your financial resources trying to get a diagnosis. Why has your family abandoned you? It surely cannot be solely due to your health concerns? What are you doing to improve the relationships in your life? Do you have a plan to do so? Seek help, if necessary, to dig yourself out and to repair and salvage your family life and restore your friendships.

If you do have BFS, you should visit their web site for support and information.

You must strive, as we all do, to muster the strength to move forward. Being alone, should not be an option for any human being. Take the necessary steps. Call a family member today. Forgive and seek forgiveness. It'll be worth it!
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Old 03-18-2013, 10:18 AM #7 (permalink)
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Default Re: The hell that one goes threw before diagnosis.

Well said Elaine!
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Old 03-20-2013, 05:29 AM #8 (permalink)
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Default Re: The hell that one goes threw before diagnosis.

Yes, it's good advice--but not all of us have family--keep that in mind, too.

To the original poster--disability can also be claimed in severe depression. It sounds like you're very depressed.

Something causes atrophy--it doesn't happen for no reason. What do the docs think?
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