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lhagsjr

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I pray to God my ALS specialist is right by saying I dont have ALS(He did a full EMG)but Im having a terrible time believing him right now:

1.) I have been twitching all over since October. And they are going to weird places now.(in between my fingers, side of face, etc)

2.) Im know for a fact I have atropy. Docs say no but they never met me before I went into there office. My arms have lost a lot of muscle. Now, one thing I have to admit, Im not as active as I use to be, mostly because Ive been sick for a year now.

3.) BOTH my shoulder crack and pop. I believe its because of muscle loss, why else would BOTH being doing this? I havent been injured or havent done anything to cause it.
Having a horrible time sleeping because i sleep on my side. After a few hours on the same shoulder i wake up in pain.

4.) Im having a problem breathing sometimes when i first wake up. Im willing to go with this may be stress but how can i be stressed when i first wake up?

5.) Speech issues. Very minimal but there.


I think I will finally, finally, have an answer soon but Im very scared of the answer. Im having an MRI of my shoulder(ordered by regular doc, to see whats up in there). They can see muscle atrophy on an MRI correct?

Also, Im meeting the neurosurgeon tomorrow morning in order to schedule my biopsy. So this will probably be happening soon as well.

Im actually very scared. Can anything good come out of these results?

I have a question about the blood tests. My ALS specialisted ordered some and they all came back clean. CPK, and a couple of others. Would something be whacky on one of those if I had ALS? Im more scared for my wife and family, I have lived in hell for a year now, nothing phases me anymore....
 

rosales20

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I completely understand

I know what you are going through. I have been the same way for several months now. I have a brother who is 28 and has had ALS for two years. Email me at [email protected] You can count on me to listen. Others have done the same for me. I am certain that I have ALS. What else can it be? Like you, I fear that day that my daughter asks for me and I am not there. Or not seeing her get married and such. I pray for my wife as well. I have fallen in love with her all over again. Our love beyond this earth, but it is still painful. What are the odds? A 28 yr. old and a 30 yr. brother having ALS. And we are Latinos to top it off (demographicaly it does not happen to Latinos very often).

I plan to get tested for genetic (SOD 1). I am almost certain that it was caused by the environment, taking supplemts for working out (we both played college football), or over exerting our bodies.

Like I said, email. I prefer it this way. We will help each other out.

Manuel Rosales
Whittier, CA.
 

CindyM

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It is very nice of you, Manuel, to offer to help out. Sometimes it seems like the fear of maybe having ALS can be almost as bad as the day you get a positive DX. At least for some folks, from what I can figure out. Kind of makes sense because human nature doesn't deal well with the unknown.

Have faith, stay strong, and focus on your friends and family. :) regards, Cindy
 

carolf

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I have already been diagnosed and am working as fast as I can to do as much as I can while I am still able. A couple weeks ago a friend stated that a DX can be a curse. That's if you give up and just sit down and do nothing. I was wanting a DX because if God chooses to heal me, I want people to know what I've been healed from! Right now, I'm in a win/win situation. If I'm healed, I win. If I'm not healed, I have faith to believe I'm on the way to heaven and that's a win too.

So, don't give up! Do as much as you can, for as long as you can.

Carolf
 

CindyM

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Hi carol-I am sorry to hear of your DX. Grampa Al often says that, after the worry and frustration of trying to find out what is wrong, some PALS find it a relief to finally know, even when the knowing turns out to be something awful like ALS. Even so, it must be a kick in the you-know-what to get the word. How is the family holding up? Cindy
 
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