Dr's Appts this week.

Dee Dee 0617

Distinguished member
Joined
Nov 27, 2019
Messages
126
Reason
PALS
Diagnosis
11/2016
Country
US
State
MI
City
Escanaba
I wish I didn't feel it is all for nothing. I am going to see my ALS team later this week. I am an eight hour drive from them. We are going to be discussing my receiving a feeding tube. Last month we had a video visit, it did not go well. I didn't want to hear what he was saying, and at the same time I didn't feel as though I was being heard. This boils down to a trach. I am against one, and that is all I am hearing. I feel like I am going to battle. They are so quiet and seemingly knowledgeable the sheer intimidation factor alone leaves you with disadvantage when wanting to self advocate. You dare not bring up trial medications AMX0035,tudca,NurOwn. The Look of boredom you receive is palpable . I hate going to the Dr's, when there is no hope to be found there. Thanks for the ear.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,489
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Dee Dee to you have to go there, can they not get things going on a feeding tube through another video visit? I hate to think of the exhaustion of travelling that far, battling opinions (when yours is the only one that should come through at the end of the day), and even now feeling stressed leading up.
So sorry it is that way for you 💗 🤗
 

KimT

Forum Supporter
Extremely helpful member
Joined
Nov 18, 2014
Messages
3,791
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
DeeDee,

I'm so sorry your ALS team is that far away and they are so closed to hearing you. Remember, YOU hired them. They work for YOU. Decisions are YOURS to make. It is YOUR life.

I was shut down, in 2015, by Mayo when I said I was taking B-12. They said my levels were already TOO HIGH. I said that was the point and started talking about the Japanese study. One of the doctors said, "you're not Japanese."

I also fired my primary care doctor at Mayo. She refused to listen to anything and didn't want to coordinate my care with my local neurologist, only doctors at Mayo. She actually rolled her eyes when I gave her the list of the supplements I was taking.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,489
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
And Kim is still here telling the stories 5 years later!
 
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