How do i get my doctor to pay attention to my case and be less scattered and more responsible ?

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I found an amazing immunologist and mast cell specialist. I thought "since my current me/cfs specialist is too scattered to help me well, this doctor should suffice, and maybe she can lead a bit more in treating my case rather than me having to do a lot of the steering". Well, our first visit was exciting. She found a lot in my existing bloodwork, and had some ideas for new diagnoses including hereditary alpha tryptasemia and also finally diagnosing long-suspected CVID (low immunoglobulin related immune deficiency), and actually planni ng to do something about it... also adding some ideas for mast cell stabilizers to my list.

But within a month or so she would stop responding to questions through patient portal. She doesn't respond to calls, she doesnt actively do much besides sometimes call in meds which she doesnt give context for or... even things important to use them , like she called in two things that need a nebulizer without prescribing a. Nebulizer or telling me where to buy them.

I'm not sure I want to name the doctor although it may help to see if other shave had the same experience bc I dont want her to read this and get mad and treat me worse. But I may have to , bc I really want to see if this is worth my money. She does know a lot about the connections btwn mcas and connective tissue damage and also the connections btwn immune deficiency and mcas and just thinks beyond "mcas" and the standard siloes for conditions. But all that thinking and dreaming does me no good if she cant stay on top of basic communication and medications for me.


Maybe I will name her later , but regardless, I want general advice. How do I move forward. How do I communicate without pissing her off that this is making my life hard. I'm tired and post surgery, I dont have the energy to lead my care team. I think she could, maybe she took on too many responsibilities at the new centre she is at or too many patients out of compassion, but I've seen doctors do that and it ends up being less compassionate as they cant help the ones they do have already as much.

Thanks ,
Frozen Borderline
 

5vforest

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I have this same exact problem. I have met with multiple doctors who all seem to have the capability to help me in some way or another, but I cannot get enough attention from them in order to make progress. At the worst, I met with a very reputable doctor (who gets mentioned a lot on the forum, in publications, etc.) who was only willing to meet with me for 30 minutes every 10 weeks, which is much too little for my needs IMO.

I have considered trying to schedule extremely frequent appointments, since with many of my doctors it seems like the only thing that will reliably get their attention is if I am on the schedule.

So I was thinking what if I ask for a 30 minute appointment each month, with a 15 minute phone appointment (for example) in between, so that I have contact with them every two weeks.

I'm not sure if most doctors would be able to accommodate such a request, but maybe worth trying.
 

SWAlexander

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I found an amazing immunologist and mast cell specialist. I thought "since my current me/cfs specialist is too scattered to help me well, this doctor should suffice, and maybe she can lead a bit more in treating my case rather than me having to do a lot of the steering". Well, our first visit was exciting. She found a lot in my existing bloodwork, and had some ideas for new diagnoses including hereditary alpha tryptasemia and also finally diagnosing long-suspected CVID (low immunoglobulin related immune deficiency), and actually planni ng to do something about it... also adding some ideas for mast cell stabilizers to my list.

But within a month or so she would stop responding to questions through patient portal. She doesn't respond to calls, she doesnt actively do much besides sometimes call in meds which she doesnt give context for or... even things important to use them , like she called in two things that need a nebulizer without prescribing a. Nebulizer or telling me where to buy them.

I'm not sure I want to name the doctor although it may help to see if other shave had the same experience bc I dont want her to read this and get mad and treat me worse. But I may have to , bc I really want to see if this is worth my money. She does know a lot about the connections btwn mcas and connective tissue damage and also the connections btwn immune deficiency and mcas and just thinks beyond "mcas" and the standard siloes for conditions. But all that thinking and dreaming does me no good if she cant stay on top of basic communication and medications for me.


Maybe I will name her later , but regardless, I want general advice. How do I move forward. How do I communicate without pissing her off that this is making my life hard. I'm tired and post surgery, I dont have the energy to lead my care team. I think she could, maybe she took on too many responsibilities at the new centre she is at or too many patients out of compassion, but I've seen doctors do that and it ends up being less compassionate as they cant help the ones they do have already as much.

Thanks ,
Frozen Borderline
Maybe this is not a good answer, but here it goes.
I observe this kind of repeating pattern of doctors fishing for patients for many years. Maybe the reason is to fill up their statistic or ego. Mind, doctors are also humans with limits. They all are very attentive in the beginning and drop you when they have no answers, or never cared enough in the beginning or try to hide something. If a doctor doesn’t like to answer there are two ways - demand attention or leave to find another. Then the whole cycle begins again. Bin there, done it many times.
However, I developed also a pattern. I write to them, beginning with the words: “it looks like you are very busy answering my questions. For this reason and that I´m still ill, I would like to seek help from another doctor and would need a detailed treatment report and a final diagnosis”. This way they need to expose how they cared for you and you can point out what they have missed. Whatever you try, it may not always work, but we need to continue living and fight to become well again.
 
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“it looks like you are very busy answering my questions. For this reason and that I´m still ill, I would like to seek help from another doctor and would need a detailed treatment report and a final diagnosis”. This way they need to expose how they cared for you and you can point out what they have missed. Whatever you try, it may not always work, but we need to continue living and fight to become well again.
I can't afford to lose this doctor , so if they called my bluff which is likely, I'd be screwed. I dont see how that approach could work for me then.
 

Judee

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The other thing is keeping it simple. You seem to have a lot of information to present. Is it possible you have overwhelmed her?

I mean doctors who seem helpful also seem to get very busy so she may have started out with the best of intentions but if you've given her a lot to process, she may be backing off from you just because it's information overload.

Anyways, just a thought.
 

Mouse girl

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hmmmm....that's a hard one. It's very hard to change people.

Do you still have apts? I know i can ask my doc questions in his portal and he will give short, to the point answers. but if it's too big of a question or if i haven't been in or online now to see him, i need to make an apt.

As for the meds, that is not acceptable. Can you call her office and ask how to get your scripts from her? I had problems in the past with getting apts with my doc in the past due to the office staff being overwhelmed or understaffed after covid. I think some docs are really busy since covid and have alot of stress. my doc never brings his stuff into the office, meaning his stress but last time we had an apt i asked how he was like i always do and he said: "surviving". He had a sence of humor at the beggining of the pandemic but i see it wearing on him.

keep at the office or her to get your meds. just be direct but polite and kind. see if that works. it can be hard right now to get anything done it seems. my doc has had alot of patients with covid so perhaps she is dealing with that too.

docs also only have so many things in their bag of tricks. they have things that worked for other patients that they talk about but might not work for you. if she is good, she will keep trying with things or listen to what you want to do and then give her professional opinion. keep trying but if she is a bit scattered, you may not be able to change her just work within her limits.

my doc's personality hits some the wrong way, but he doesn't bother me. sometimes he ends the session with just a goodbye and would start to walk out but i could stop him and ask a another question or tell him two more things and he will stop. i hope this helps. if you have more specific things going on with her let us know maybe others have some good ideas.

just keep trying and keep a kind polite but to the point attitude and that can be a good route to go.
 
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The other thing is keeping it simple. You seem to have a lot of information to present. Is it possible you have overwhelmed her?

I mean doctors who seem helpful also seem to get very busy so she may have started out with the best of intentions but if you've given her a lot to process, she may be backing off from you just because it's information overload.

Anyways, just a thought.
I dont think this is it. I just asked her follow up questions this time on things that she initiated. Like "you prescribed me this but you didnt prescribe a nebulizer to use it, what do I do" and "you said I needed extra antibiotics, what do i do "
 

BrightCandle

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It isn't you, its them. When doctors fail and run out of ideas they either just start ghosting you or they start treating you badly blaming you for lying to them or being mentally ill and pushing you down the psychosomatic bullshit angle despite all the stuff they found really was wrong in the blood and urine tests. I kept trying with a doctor who was ghosting and its been a wasted year. Time to find another doctor IMO. They all seem to end up the same way until you find a genuinely good one but even then you may burn through their skills fairly rapidly.
 

Mouse girl

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keep at her. Maybe just keep it short, i need the extra antis so i need that script and the script for the nebulizer or whatever that needs. keep trying since you want to keep her. i'm sorry it's so frustratiing
 
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I thought I could at LEAST get my wonderful GP to watch the Jen Brea movie. Seemed like he could eat dinner, drink wine, Skype the fiancee, work on the book and watch the film, all at the same time.

But no.