Old 03-11-2016, 04:56 PM #1 (permalink)
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Default Feeling a little frustrated today...

Well, I'm just disgusted with the whole doctor's appointment thing. What a complete and utter waste of my time, yesterday. You can certainly tell what sort of healthcare you have by the level of your doctor. I saw him for maybe 1 minute and I haven't seen him in 3 months. Thank goodness he's my PCP and *not* the neurologist. Here's the conversation.

DOC: HOW ARE YOU DOING?
ME: A LOT HAS HAPPENED SINCE I SAW YOU LAST.
DOC: REALLY? WHAT'S THAT?
ME: I HAVE A DIAGNOSIS FROM THE NEUROLOGIST.
DOC: REALLY? WHAT'S THAT? (a little repetitiveness)
ME; HE SAYS I HAVE BULBAR ONSET ALS.
DOC: THAT'S COOL.
ME: WHAT?!?!?!?!
DOC: WHAT? WAIT, WHAT WAS YOUR DIAGNOSIS?
ME: ALS.
DOC: WELL, THAT'S NOT COOL, BUT IT IS COOL THAT YOU FINALLY HAVE A DIAGNOSIS. I'LL HAVE MY NURSE REFILL YOUR PRESCRIPTION FOR CHOLESTEROL MEDICINE AND I'LL SEE YOU AGAIN IN 3 MONTHS.

I kid you not... that was it. I spent maybe 8 minutes with the nurse. She was a little more helpful than he was. <sigh> This was so very frustrating, not only because it broke my heart a little, but it caused a load of extra work. Calling Wellcare and insisting on another PCP, filing a report on the doctor for... well.. for being an ass and having to find another doctor. Since I'm unable to talk on the phone, Joe had to spend the rest of his day off dealing with all of this.

I know... breathe. I'm trying. It just sucks when one of your dominoes falls and topples all the others over. Sorry, just needed to vent.
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Old 03-11-2016, 09:22 PM #2 (permalink)
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Default Re: Feeling a little frustrated today...

I'm sorry you had to experience that but know that you are not alone. I would venture to say that at least 50% of us have experienced that same level of callousness from doctors, supposed friends and even relatives. Probably even higher than that. I say there's a special place in hell for these people. You will always have support and understanding from your forum family.

I hope you have happy days ahead that will push that unpleasant experience out of your mind.

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Old 03-11-2016, 10:45 PM #3 (permalink)
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Default Re: Feeling a little frustrated today...

Ditto what Vince said, and when you find a good PCP (friends, family and social media can be good pointers), ask him/her to refill the statin for a year so you can spend your time together on health issues that matter more to you.

Best,
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Old 03-12-2016, 02:56 PM #4 (permalink)
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Default Re: Feeling a little frustrated today...

"Cool"? Really? Wow. I wonder if he even knows what an ass he was.

I'm so sorry you experienced that and that you are going through the hassle of finding a new PCP, but glad that you ARE doing that. I'm afraid I'd have to ask if he was really going to charge me for the visit...

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Old 03-12-2016, 08:02 PM #5 (permalink)
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Default Re: Feeling a little frustrated today...

"Cool"? Was he 15? I have nothing to add except to assure you you deserve nothing but the best in care. I am sorry for the hassle of finding someone new, but encourage you to do so so you don't have to deal with someone who is not 100% present and focused on your needs. Good grief! What a putz.
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Old 03-12-2016, 09:01 PM #6 (permalink)
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Default Re: Feeling a little frustrated today...

Just wow!

I can't believe he is allowed to see patients.

Glad he won't be seeing you any more.

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Old 03-13-2016, 12:52 PM #7 (permalink)
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Default Re: Feeling a little frustrated today...

Katy, I am completely shocked that someone (anyone) would say that to you. You did the best thing by deciding to drop him. I can't believe someone could have so little compassion.

This reminded me of an incident that happened to my husband shortly before he was officially diagnosed with ALS. He was in the waiting room at his neurologist"s office. The receptionist came over to him and asked him a question My husband stood up and answered her and she loudly said, "sit down, you're spitting all over me!" Why do people work in the health field if they have not an once of compassion??

Sharon
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Old 03-14-2016, 07:59 PM #8 (permalink)
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Default Re: Feeling a little frustrated today...

We had a neuro fellow the day of Steve's peg surgery say "so, you have als?" "Great". I replied no not really. She left very quickly
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Old 03-15-2016, 02:58 AM #9 (permalink)
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Default Re: Feeling a little frustrated today...

When Chris told his daughter (19 at the time) that he had been officially diagnosed with ALS (which we simply call MND in Australia), she knew he had been through 9 months of heightening concern and knew he was seriously ill. She knew we had been up to Brisbane to see specialists.

So, she pops home just to grab some stuff to go out again, as girls of that age do.

Chris already had speech issues that meant most people could not catch even half of what he said.

So, Chris says "We need to have a talk"
She says "OK" and stands still (doesn't sit down as though we are all going to talk for more than a moment)
Chris says "I've received my diagnosis, I have motor neurone disease"
She says "Oh cool"

pregnant pause

So she says "Well I've got to go now, see you dad" gives him a quick peck and scarpers...
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Old 03-16-2016, 08:44 PM #10 (permalink)
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Default Re: Feeling a little frustrated today...

Katy,
There is no excuse for that type of behavior from a professional. I'm so sorry.
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Old 03-17-2016, 03:53 PM #11 (permalink)
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Default Re: Feeling a little frustrated today...

Quote:
Originally Posted by pittsburghgal View Post
Katy, I am completely shocked that someone (anyone) would say that to you. You did the best thing by deciding to drop him. I can't believe someone could have so little compassion.

This reminded me of an incident that happened to my husband shortly before he was officially diagnosed with ALS. He was in the waiting room at his neurologist"s office. The receptionist came over to him and asked him a question My husband stood up and answered her and she loudly said, "sit down, you're spitting all over me!" Why do people work in the health field if they have not an once of compassion??

Sharon
Sharon,
To have a neurologist's receptionist do that is even more unacceptable! You'd think they would know and be extra sensitive. I, too, am sorry you had that to deal with. People just baffle me at times...
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Old 03-21-2016, 03:50 PM #12 (permalink)
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Default Re: Feeling a little frustrated today...

Quote:
Originally Posted by Katy Sunshine View Post
Well, I'm just disgusted with the whole doctor's appointment thing. What a complete and utter waste of my time, yesterday. You can certainly tell what sort of healthcare you have by the level of your doctor. I saw him for maybe 1 minute and I haven't seen him in 3 months. Thank goodness he's my PCP and *not* the neurologist. Here's the conversation.

DOC: HOW ARE YOU DOING?
ME: A LOT HAS HAPPENED SINCE I SAW YOU LAST.
DOC: REALLY? WHAT'S THAT?
ME: I HAVE A DIAGNOSIS FROM THE NEUROLOGIST.
DOC: REALLY? WHAT'S THAT? (a little repetitiveness)
ME; HE SAYS I HAVE BULBAR ONSET ALS.
DOC: THAT'S COOL.
ME: WHAT?!?!?!?!
DOC: WHAT? WAIT, WHAT WAS YOUR DIAGNOSIS?
ME: ALS.
DOC: WELL, THAT'S NOT COOL, BUT IT IS COOL THAT YOU FINALLY HAVE A DIAGNOSIS. I'LL HAVE MY NURSE REFILL YOUR PRESCRIPTION FOR CHOLESTEROL MEDICINE AND I'LL SEE YOU AGAIN IN 3 MONTHS.

I kid you not... that was it. I spent maybe 8 minutes with the nurse. She was a little more helpful than he was. <sigh> This was so very frustrating, not only because it broke my heart a little, but it caused a load of extra work. Calling Wellcare and insisting on another PCP, filing a report on the doctor for... well.. for being an ass and having to find another doctor. Since I'm unable to talk on the phone, Joe had to spend the rest of his day off dealing with all of this.

I know... breathe. I'm trying. It just sucks when one of your dominoes falls and topples all the others over. Sorry, just needed to vent.
Katy, Can I have your permission to use this conversation in the manuscript I'm preparing (see general ALS discussion for more info)
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Old 03-24-2016, 06:57 PM #13 (permalink)
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Default Re: Feeling a little frustrated today...

Absolutely Kim! Anything to help.
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Old 03-25-2016, 09:47 PM #14 (permalink)
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Default Re: Feeling a little frustrated today...

Sorry you went through this. I hope you find a good PCP. It is tough when we have to educate a person in the health care profession.
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