Old 06-03-2009, 02:32 PM #1 (permalink)
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This is my first entry and first time putting down the words that my husband has a MND. Whew! So my husband starting having weakness and atrophy in his hand 18mos ago. We finally saw a neurologist in Nov. and she said she thinks he has ALS. We got a second opinion and she said it is too early to make that diagnosis. Anyway, my husband is in BIG denial (I don't necessarily think that's a bad thing). We were told to return for another EMG last month but I feel like if he has ALS we certainly won't miss it and we don't need another painful test that will say maybe.... I am a hospice nurse, this is good and bad in that I look at him daily and think I see him wasting away. Subtle changes. He still can work, he's a carpenter supt. and he really is not limited much as to what he can do but I think he's getting scared and doesn't want to admit it to me or himself. Can anyone think of a good reason to keep going to the doctors? I know there is no medical treatment per se and he isn't interested in taking Rilutek. I get very focused and admit I may be missing the big picture or at least alot of the parts. Sorry I'm so long-winded.
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Old 06-03-2009, 02:45 PM #2 (permalink)
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The main reason to keep going to doctors is because there is a LOT they can do to help prolong his survival, maintain his fuctioning, and keep him on an emotional even keel.

There is much more to ALS than just losing muscle. If he developes bulbar issues, his emotions may go out of whack and out of control, and there are meds to help. If his swallowing is impaired, there are ways to help him eat and keep his weight up. If he has breathing problems, same thing.

Keeping ahead of ALS is your best bet for him to continue living a comfortable, productive life. Many, many, many ALS patients are living 10 years or more. They couldn't do it without doctors and the latest medical procedures.

I suggest you get in touch with your nearest ALSA (ALS Assoc.) office. They can help you both plan ahead and find the best resources available.

Take care. (and welcome to the forum ...)
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Old 06-03-2009, 02:53 PM #3 (permalink)
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I'm sorry about your situation. The reason to keep going to the drs is if it's not ALS and is something treatable he could be missing out on a treatment. I don't know all the testing he has had or what his other symptoms are, but a few people on this forum have been misdiagnoseded.
Is the second dr you are seeing an ALS specialist? What did his last emg show?
And on the other side of it is if he really does have it, he might want to do certain things before he can't.
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Old 06-03-2009, 03:03 PM #4 (permalink)
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The physician that gave us the ALS diagnosis is a specialist. It's so hard to believe that this could be ALS! I guess I must be in denial also. What do people do when they are just waiting to see of the diagnosis is correct? My husband has had every possible MRI, Blood test, EMG, etc. It's crazy! You don't want the diagnosis and yet not having one leaves you in limbo.
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Old 06-03-2009, 03:21 PM #5 (permalink)
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You said the second neurologist said it was too early for a diagnosis. So it is important to go for the EMG again. You don't want it to turn out to be MMN or CIDP and have him deteriorate further if treatment could have helped. We went through lots of testing with hubby who has CIDP, but he had a query of ALS in the beginning. He receives monthly IVIG and is doing pretty well. He had several EMG's along the way and didn't find them overly uncomfortable. It's a small price to pay for getting the answers.
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Old 06-03-2009, 06:58 PM #6 (permalink)
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Get the 2nd EMG! He must! Like the others have pointed out, it could be treatable!

Have hope!
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