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ag1554

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Mar 22, 2013
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Loved one DX
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US
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Texas
City
Houston
I am so worried, and sad. My husband just told me that after having the EMG this week they have cancelled the catscan that was scheduled next week, and are having him go to a doctor who specializes in Neuromuscular disease. The doctor who read the EMG says he does not believe it has anything to do with his spine, that it is a neurological issue. That scares the heck out of me - darn google. We were so hoping that the issues he's having were caused by a bulging disc or something.

Symptoms started a couple of years ago I guess - at night his legs would twitch and cramp up, then he began to trip, lose his balance, etc. then he got the foot drop in his right leg, then muscle atrophy, now it is both feet. He was stubborn and would not go to the doctor!

Finally he has gone, and now, we both fear that ALS may be the diagnosis. Could these symptoms be another disease? I am going to have a tough time this weekend. Got to keep up happy face for him, but right now, I feel like my heart is breaking!

Since it has taken a couple of years to get to this point, could that mean that it is slow progressing? I pray that this is the case.
 
Hi ag1554,
ALS is a fearful diagnosis--but until that doctor says that is it, you have to believe that it could be something else. There are many neurological disease, none "good" but not all as final as ALS.

It is scary and heartbreaking but you are right, you need to keep up happy face until you know. I would suggest that you some time studying up, but remember that everything you read says 3-5 years...here on this forumyou see all different life spans. my husband has been fighting for 6 years now. the thing is , all the cals and pals you see here are living each day and not only thinking about the end. the end can come for anyone at anytime. You can believe that we will be here for you and your husband if, and that is IF he gets an ALS diagnosis.
Don't give up hope yet! as another member here says: it is not ALS until it is not anything else!

B
 
That would be a slow form of ALS, if that turns out to be the diagnosis, perhaps even UMN dominant.

Barbie's right, though. The crowd around here isn't into doom and gloom much. Instead, if there's a strong concern about an ALS diagnosis, we would generally suggest you go get doing fun stuff now. If it turns out he has something treatable, you'll have done fun stuff you always wanted to do as a couple. If he is a PALS, you will be redeeming a time and ability he won't have in the future. Just don't break your bank balance for the moment, but this is the time to enjoy all the little things in life you enjoy but have to make time for.

Most of all, don't sit around worrying about the future. Follow up with the medical process and treasure the time you have together now. That isn't a plan that causes regret in any scenario.
 
Thanks for the kind replies. We are just spending a quiet weekend together. Nothing to be done until we know something definitively. I am trying not to think sad thoughts but truly do appreciate knowing there is support and knowledge here when/if we get the word.
 
AG i knew from ur name you were probably from houston. You aggies are proud. What dr. Are you going to see? I am in that limbo position as well and hoping and praying that nothing is wrong. This waiting is horrible but then you think do we really want to know. Until such time i just try and do whatever i can to not think about it.

We are up in spring. What part of houston are you? Good thing about houston is that we have some of the best medical facilities on the earth.

Good luck.
 
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