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Distinguished member
Dec 4, 2007
Have not posted for awhile. My husband has still not been diagnosed. The doctor at the ALS clinic has put him on rilutek and he has had one round of IVIG. She wants to cover all the bases. On his last EMG he had both chronic changes and some acute. She has labeled his condition possible post polio syndrome, but thought his muscle weakness was too progressive, multifocal neuropathy, or ALS. He has gone through multiple EMG's, a spinal tap, countless bloodwork including Athena to rule out Kennedy's disease. He is scheduled for another EMG mid April. He is extremely depressed. What makes it harder for him is that my sister's husband is in his 4th year of ALS, so he knows what could be down the road for himself. He has lost so much muscle in his shoulders, chest and arms. He can only walk a very short distance, and uses a cane. Fasciculations are in every part of his body. He was on disability for four months, but returned to work with a different position. Until someone tells me otherwise, I am remaining optimistic, where he has already given up all hope. He sits in the chair and stares up at the ceiling for most of the time he is home. He is on 75 mg. of elavil. I don't know what to do or where to turn.
Hi Stikeout. I am so sorry this is happening to you and your DH. Hopefully he will adjust to his new body soon. Sometimes it takes awhile to quit grieving the old one, and sometimes people just need time to ponder what they will do and how they will manage. THese are scary times for everyone, but there are lots of great folks on this forum and we will be with you at every step of the way. Cordially, Cindy
Thanks so much for your care and support. The people on this forum are the best!

Very sorry to hear about your husbands diagnosed.

You say he is on 75 mg of Elavil. Does he take it once a day at night or two or three times during the day? Elavil is very sedating and 75 mg would make most people a zombie (sorry). My husband tried Elavil (10mg) at night for sleep and drooling and could not tolerate it due to "hangover" effect the next day. He would be unable to do anything but sit around, which in turn caused him further frustration.

I hope you have registered with the ALSA.

Keep us posted and welcome.

As of now husband has no definite diagnosis, just possibilities. He takes only 1 elavil right before bed. I wish he was sedated, because alot of the time he seems very angry with me. In fact tonight he just went to bed without even telling me he was going or saying goodnight.
Forgot to add that we are registered with the MDA.
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