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lhagsjr

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OK Guys and Gals,
Here's the deal. I have ALS or another MND but my tests are clean so the docs wont diagnose me. However, I twitch like crazy, I have terrible atrophy, and my tongue is a mess. In addition all my joints click due to being unstable due to extreme muscle loss. I know I have it. Since last May '07 when an ALS expert dismissed me I havent really talked about my problems with my wife or family because I didnt want to burden them. They think im clean because the ALS docs says I am. The last round of tests(Oct. 2007) I went to the drs on my own and didnt even tell them. I know Im in big trouble. Would you:

1.) Continue to live the way I am. Dealing with on my own and pretty much leaving everyone else to live there lives normally.

2.) Breakdown to them?

Let me know what you think.

Thanks,
Lou
 

Mark

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Hi,

I'm not sure I fully understand your reluctance to tell your family. I would hope they would provide emotional support. If in fact you have ALS how long can it be before you will also need their physical help? How will they react then? From my perspective openness on both sides with ongoing dialogue is helpful and necessary. I don't have ALS but rather a variant of PMA but with severe atrophy of the upper limbs. Lots of luck.

Mark
 

lhagsjr

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Mark

The reluctance is Im 29. They dont want to here it and they believe the docs. To them there is nothing to talk about.
 

kevinw

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I guess there is no right or wrong answer. The only thing I would say is that if you honestly believe something is going wrong, it must be very difficult to handle it alone. I would have say I would continue to do as much as I could for as long as I could and if something is truely wrong there will be visible signs that will create questions from others. :?

I personally would be thankful that the ALS specialist gave me good news, but this is a conclusion that only you can come to......and remember, there's always people to talk to on here if you feel nobody wants to hear you out.

Take care & Good luck
 

brooksea

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Lou,

If you have terrible atrophy, how can that be ignored by anyone, including your family. And when you speak of 'family,' do you mean immediate or parents or what?

I don't remember all of your situation, as far as testing that has been done. Have you been to anyone besides GPs and Neuros? The muscle atrophy and twitching could be caused by other things than ALS, non of them too pretty either.

I would think that you would need the support of your family, no matter what kind of diagnosed or non diagnosed you have. Perhaps if you approached them from the angle that there is something wrong and you are trying to get to the bottom of the ailments and need their support in helping you achieve this goal... Yes, you are young - but (to paraphrase Pat Benatar) "life is a battlefield" and you are a soldier trying to defeat the enemy. Wouldn't you like your family to say "We got your back, man!"?

I wish you luck my friend...and let us know how it goes!
 

crystalkk

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Lou,

You should talk to your family,
Do you have any weakness with the atrophy, because the last time I asked you did not, which is a very good sign.
What other symtoms are you having besides twitches and atrophy?
Like CJ said have you been to any other drs besides nuero's, please go see a endocrinoligist and then a rhuematoligist, after that if they don't find anything you can go back to Dr. McCluskey (trust me) he is not going to turn you away, just call and make an appointment or you can go to Drexel for another opinion there is an ALS clinic there.
 

Sammantha

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What to say

If you are truely sick than you will have no choice to let them know because they must suspect it. When i first became ill, my husband could not tell. After a year of seeing twitches and thinning of muscles he no longer has to ask me if there is something wrong, heknows. Now, my specialist is like yours, i have not gotten a ALS diagnosis, but i know something is terribly wrong. Your family will just have to get used to your situation..... Just because you do not have a name to it does not mean you are faking.....Unfortunately ALS or other serious illnesses will rear their ugly head and you will no longer be able to fake being WELL. Good luck and ihope for the best...
 

kevinw

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Drexel

Dr. Patterson at Drexel is one of the best, most compassionate doctors I've ever dealt with. She and her team at Drexel are fantastic.
 

mjk201

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bro you should be glad you got to see a expert nuero and he cleared you. i myself am 29 years old and making myself sick over do i have als or not. i just got put on a water pill because between worring and and everything else i messed up my blood pressure. i also have twitching once and awhile it happens all over the place and it comes and goes. i lost 9 pounds in a month a 2 weeks and have some muscle loss and cramping. but it could be numerous things. my problem was looking online in the first place. because it will always put thoughts in your head. i know there's something wrong with me but i don't have the money right now to see a expert. so i'm being tested for a thyroid condition which cause some of the same symptoms. so be thankful they said you didn't have als and go from there. wish you the best of luck godbless. mike
 

mjk201

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bro just tell your family. but you must really tell your wife because she choose to spend the rest of her life with you. you owe here that much so see knows whats going on and doesn't feel that you don't love her enough to let her in to your head.
 
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