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L4dybugg

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...My Hubby (Andy)

He is not doing well at all today, he is in alot of pain, he calls me from work on his lunch break, to let me know how he is doing. He told me today, that he can't hardly do his job at work now, he had to get some of the guys there to help him. He can't use his hands and arms much at all now when doing things, worse than before. Also, he has to sit down every chance he can get, because he can't hardly stand at work. In alot of pain in those legs to. I don't know how much longer the boss will put up with that, he told him he would work with him, but you know how that can go.

And he is having trouble with his breathing, the other day he had a real bad spell with it, he was just sitting, and his breathing was heavy, he said it
"feels real tight around his throat, and feels like his air is restricted" and that this is coming and going.

So he now has an appointment to go to his lung dr to see what is going on there, he is also on a cpap, because he has sleep apnea, they told him it was severe, but I don't remember the number that it was. I don't think it is doing him good anymore. His appointment there is Oct 30th. And it's been a while since his breathing has been checked, I'm guessing over a year.

He goes back to his regular neuro on Oct. 24th. She will be making his appointment to the ALS Center in Nashville then. I'm going to do my best to get this appointment as soon as I can. It is suppose to be sometime in November.

Whatever he has going on, it is progressing faster, I'm afraid he might be out of work before we can get him there and diagnosed.

Lori
 

Zaphoon

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It might not be a bad idea for your husband to go to the emergency room at the local hospital with as much trouble as he is having. The hospital may have some pull in getting his neuro appt moved up asap.

Zaphoon
 

BethU

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I agree with Zaphoon. It sounds like his breathing is really in trouble, and if his Cpap isn't helping it may need to be adjusted. Can you call his neuro and see if she can see him on an emergency basis. (Sometimes doctors will "overbook" to fit in an emergency.) Tell her about his breathing problems.

If she can't see him, the ER might be your best bet. It sounds to me like someone should see him right away.

Good luck,
BethU
 

MtPockets

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Lorie, I am sorry to hear Andy is having so much troubles. Maybe you can call the ALS Center in Nashville and explain the situation or call your Neuro and ask to speak to him about the problem. He needs to get in as soon as possible.
I hope this works out soon.
 

L4dybugg

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Thanks so Much

I will do my best.

You guys are the greatest. ;-)
 

L4dybugg

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I do have a question though, what will make his breathing do that with the coming and going?
 

BethU

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If his diaphragm is weakening, his lungs will not be able to function as well. He may need to use a Cpap (or bipap) during the day, too, to keep getting enough oxygen. I think he will feel MUCH better when his breathing is improved.

Hang in there
 

L4dybugg

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Thanks Beth

I'm gonna make some phone calls, He gets off work around 3:30

I'm gonna have a talk with him. And see what I can get done.
 

freddiesnetty

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I would have to agree with Beth, sounds like his diaphragm is weakening this started to happen to Freddie before he was on his bi-pap 24/7. He is now trached and has no problems with his breathing....But that is a whole other story.
I feel so agreeable today.............lol..........every post I have responded to today is" I would have to agree", there is an abundance of knowledge here...........I would not be able to get through the day sometimes, without my friends here...........Good Luck!
And do go to the emergency, that will speed up your appointment. I know that from experience.
Good Luck
netty
 

L4dybugg

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Trip to ER

First of all I want to thank all of you on here, you guys have been a Heaven sent for me. ;-)

We went to the ER as soon as he got home, which was just a little after 3:00 pm . We been there all this time, just got home a little while ago. They took him right in,
as of right now his breathing is ok. But she said if he gets any worse to come right back. They took alot of blood, everything there that she checked was ok, don't know really what they checked for.

But they took some chest x-rays and it is not looking good at all, she said that "the muscles around his lungs are wasting". She wants him to go right away back to his regular neuro (we got that moved up, so he goes there tomorrow). The ER dr. said, that he needs to have a swallowing test done. And to go to his lung dr. and, to the ALS Center in Nashville right away. She said that would have to come from his Neuro to move it up. She gave us the disk of the chest x-ray, I have not had a chance to look at that yet.

So I am thinking could this be Bulbar setting in?

Hugs Lori
 

CindyM

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I am sorry to hear this, Lorie. I hope you get some answers soon. Hugs, Cindy
 

Zaphoon

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I am glad you got him into the E.R. and elated that your neuro appointment has been moved up right away. Good Job!

Zaphoon
 

L4dybugg

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Thanks Zaphoon.

That gives me some relieve, To know we are starting to get somewhere. It seems that things are happening so fast. I can't even begin to image how he feels. I feel at times like this is all a bad dream, I can't believe what is happening. And at times I feel compeltely numb. But I am still holding on! I have to.

I have been keeping my eye on him, he keeps getting quiter on me, I think he maybe getting depressed. If I don't forget it tomorrow, I'm going to talk to his dr about that. I have so much on my mind, I can't think straight. :confused:
 

MtPockets

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Good idea Lorie, to talk to the Doctor about possible depression ahead of time. I know when I first started serious symptoms, it came on fast.
You have been on top of everything for him to this point, good for you. He is blessed to have you there for him. The most important thing to him probably now besides finding out what is going on, is your support. He, like you, is probably scared. We all are scared or afraid of the unknown. Sort of like our stock market right now has a lot of people scared. Sorry, got off subject there. I hope and pray for the best for you both and your family during this time.
 

BethU

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L4dybugg ... Thank God people are starting to respond! SO GLAD he got an appointment right away.

I'm sure you will think of a million questions when you get home, so I'd suggest making a list as things pop into your mind in the days ahead. Also, you might want to keep a record of his symptoms and any changes or problems.

Hoping for the very best outcome ...
BethU
 
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