My husband

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kelly1234

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Mod: Background from profile post that we did not see until today:
I am concerned about my husband. He now weight 142........he can't breathe...he always had asthma but this is different. His muscles are wasting away......his reg doctor and pulmonolgist keep doing tests, but meanwhile he is wasting away. He just cancelled his 6 minute walk because he can't do that. He cries a lot....he just had a broncoscopy and they took samples..........but it's a 2 week weight. He is on oxygen when needed. He is struggling. Just to get showered and dressed it exhausts him. They keep giving him new inhalers which are not working. HELP...I had him stick out his tongue after reading some of the message boards...His tongue is bright red and there is a lot of movement in it.....which he does not feel....
Help...........I am watching him waste away to nothing. I have to write out his checks for him, because his right arm was diagnosed with ulnar nerve damage..and his left hand shakes...........he can't do much of anything but watch tv without getting exhausted.........I've learned that it could take up to a year to get diagnosed with als...but I don't think we have that time looking at him........help

<posted 5 June> i reached out here cause I knew this is what my husband had; and a lot of men in his age group are coming down with this. He had been treated for asthma and lung infection. I knew it was more because I saw his arm and hand wasting. Needless to say when at the end of April he finally got the neuroligst who gave him the needle test...told him his diapgham was floating and he had not chest muscles........... I was unfornuately right......he didn't want any more tests, and he didn't want to have a breathing machine...so he came home on hospice. This site has not been a friend for me...I cried out and no one came.............there has to be a better place...........I truly believe that the vaccines speed up this disease........he went downhill quickly after the second vaccine..........I only wish I could have communicated to people, but when you sign up you are limited. I think we need to start a site elsewhere where we can all talk. Like my husband said; why do i need to keep on testing to get a proper diagnosis........you told me all I need to know after the needle test. I agree with him.............they know they just don't want to say...we know because we see.............
 
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lgelb

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Kelly, profiles are not automatically brought to members' attention, so that is why no one replied to your profile post. I am very sorry that you did not feel heard.

Please keep responding to this thread by using the "Reply" link, and we will try to help.

Did the neurologist actually say that your husband has ALS? Can you post the EMG report?

There is a caregiver support group on Facebook, also, and if you look on the ALS Association site, you can find the chapter in your area and ask a care coordinator to assist you as well.

Best,
Laurie
 
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