Vomiting and ALS! Need help

[iconracr]

Hello,
I am new here and hope someone here can help. My mother has ALS since July. She has slowly lost her ability to speak over the past month. At the same time she can't seem to keep anything down and has started vomiting after eating. She was scheduled to go to the Mayo Clinic during an attack. She could barely walk. They admitted her and said it was a virus and not from ALS. That was the last day we had any hope.

They sent her home and that week she was vomiting and taken to the ER, this time in her home town. They kept her in the ER for over 12 hours, didn't admit her, then let her go home. They again said it was a virus. She ate a little that night then started vomiting again.

It never stopped, her GP didn't know what is was. And again in the ER. We finally called hospice for help. It had been three weeks. Thinking they would assist with the issue but not get ready and watch her die. She still walks, breaths on her own and only just started to lose he voice.

When hospice arrived she was so week. They admitted her to an acute care hospice center. With the idea of stabilizing her then get her home again. The vomiting continued. They didn't offer any treatment for the vomiting or relief. The third day a clerk came into her room and asked what funeral home she wanted to be sent to. WTF. Really? She refused to see any of us. Totally depressed, we were shocked at the lack professionalism. Then today she checked herself out. Now we are starting over again today. It has been a month since it all started. One thing I am sure of, it is the ALS and a virus.

Does anyone have any experience with vomiting and ALS. If so what causes it and what treatment helped.

Thank you in advance, Cheryl

 

[Alyoop]

That's absolutely disgusting. Your mum needs a gastro referral urgently. As far as I know, ALS does not cause this kind of symptom. I would kick up a huge fiss and get her to a Gastroenterologist.

 

[iconracr]

She started having some weakness first. They had a problem with swallowing and then vomiting. Now she has a really had time talking. Takes a really long time to say anything. We wil check into the gastro. She is home now.

 

[caldona]

I would tell that clerk I did not appreciate what she in front of your mom and a funeral home was not needed until a death occurred and no death had occurred. Then I would go to her boss and report her. I would bet your not the only family she has done this way.

 

[iconracr]

I would tell that clerk I did not appreciate what she in front of your mom and a funeral home was not needed until a death occurred and no death had occurred. Then I would go to her boss and report her. I would bet your not the only family she has done this way.

I will do that. It will not make me feel better but maybe someone else will not have this happen in the future. Thanks for the thoughts.

 

[Ms. Pie]

I am horrified at the treatment (or lack of) and thoughtlessness she experienced! Sometimes you just have to take matters in to your own hands. Yes find a gastroenterologist for her and get her stable! Can you report these imbeciles to someone? Sheesh!

 

[Alyoop]

I cant help think that these people you are dealing with have just thought..." she has ALS, so why bother". It's just so atrocious I feel angry, even over here in New Zealand. It's too easy for some medical personnel to put there prejudices, about certain illnesses into their worth ethics, or lack of.

The person with the " funeral" comment, certainly needs a complaint being laid against them.

You will sadly have to be very strong advocates for your MUM. I think putting up with vomiting is the worse possible thing.putting up with it for as long as your mum is being forced to is so unnecessary.

Will be hoping that she can be helped ASAP.

 

[iconracr]

I cant help think that these people you are dealing with have just thought..." she has ALS, so why bother". It's just so atrocious I feel angry, even over here in New Zealand. It's too easy for some medical personnel to put there prejudices, about certain illnesses into their worth ethics, or lack of.

The person with the " funeral" comment, certainly needs a complaint being laid against them.

You will sadly have to be very strong advocates for your MUM. I think putting up with vomiting is the worse possible thing.putting up with it for as long as your mum is being forced to is so unnecessary.

Will be hoping that she can be helped ASAP.

Thank you, Cheryl

 

[laurel]

Cheryl I remember in years past reading on this forum about PALS who experience gastroparesis. ""Gastroparesis is a condition in which the muscles in your stomach don't function normally.

Ordinarily, strong muscular contractions propel food through your digestive tract. But in gastroparesis, the muscles in the wall of your stomach work poorly or not at all. This prevents your stomach from emptying properly. Gastroparesis can interfere with digestion, cause nausea and vomiting, and play havoc with blood sugar levels and nutrition.

There is no cure for gastroparesis. Making changes to your diet may help you cope with gastroparesis signs and symptoms, but that's not always enough. Gastroparesis medications may offer some relief, but some can cause serious side effects.

It's not always clear what leads to gastroparesis. But in many cases, gastroparesis is believed to be caused by damage to a nerve that controls the stomach muscles (vagus nerve).

The vagus nerve helps manage the complex processes in your digestive tract, including signaling the muscles in your stomach to contract and push food into the small intestine. A damaged vagus nerve can't send signals to your stomach muscles. This may cause food to remain in your stomach longer, rather than move normally into your small intestine to be digested."

I think Rose who is on this forum suffered from gastroparesis. I just thought I would toss this out as a possibility. I will say a prayer for your mom.

Laurel

 

[iconracr]

Thank you so much. It gives us a direction. She is going back to the Mayo Clinic. It seems no one in the ALS study has it. Thank you for taking the time. Cheryl

 

[notgivnup]

Chery, l so sorry about your mom, I will be praying she finds the answer to her problem and she can get some relief somehow real soon. I often get sick after pushing myself to far past what I should. Also had a recent couple evenings could not keep dinner down, but found out was due to medication I took with dinner. Does she take any medication with her food? Just thought I would throw that in to see if it could help. And Welcome to the forum family. {{HUGS}}

 

[jb63]

I agree with Aly that there is an "ALS why bother" mentality to be watched out for.
Janet

 

[Georgia Peach]

My husband suffered with the vomiting for months. It has finally subsided but his loss of weight is shocking. Ondansetron HEL 8 MG seemed to help.