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Inconsistent results from salt/fluid loading


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8 hours ago, Sarah Tee said:

After reading about physicians, I feel like maybe they could be good allies for dysautonomia diagnosis, given that it can cross specialties.

@Sarah Tee - here in the US everyone has - or should have - a PCP. They are the ones keeping track of all communication between different specialists and have the overview over ALL health updates in ALL diagnoses of each patient and they have all the records. Any specialist we are referred to communicates with the PCP ( or GP ) after each visit. The PCP also handles all referrals and insurance matters. Without My PCP I would be completely lost! ( But I have an exceptionally good one ). So I think it would be a good idea if this doc will take you on as patient!!! Good Luck!!!

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17 hours ago, Pistol said:

@Sarah Tee - here in the US everyone has - or should have - a PCP. They are the ones keeping track of all communication between different specialists and have the overview over ALL health updates in ALL diagnoses of each patient and they have all the records. Any specialist we are referred to communicates with the PCP ( or GP ) after each visit. The PCP also handles all referrals and insurance matters. Without My PCP I would be completely lost! ( But I have an exceptionally good one ). So I think it would be a good idea if this doc will take you on as patient!!! Good Luck!!!

So in the US, the PCP is your everyday doctor – I think equivalent to GP in Australia and UK?

This role of physician is different to that (as defined in Australia and NZ). I had not heard of it before. I was referred to the physician by my GP. I get the feeling he is the specialist the local GPs refer people to when they don't know which specialist to choose (ideal for dysautonomia!).

 

WHAT IS A GENERAL PHYSICIAN?

General Physicians are highly trained specialists who provide a range of non-surgical health care to adult patients. They care for difficult, serious or unusual medical problems and continue to see the patient until these problems have resolved or stabilised.

Much of their work takes place with hospitalised patients and most general physicians also see patients in their consulting rooms.

Their broad range of expertise differentiates General Physicians from other specialists who limit their medical practice to problems involving only one body system or to a special area of medical knowledge.

ROLES OF A GENERAL PHYSICIAN CONSULTANT

General physicians are consultants who care for patients with special or difficult problems. General physicians only see patients who are referred to them by other doctors, usually by the patient's own general practitioner.

 

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@Sarah Tee - yes, that is different from a PCP. I always understood that GP and PCP were the same thing. So from the description you posted it does sound like it is essentially a doc who will see patients with chronic conditions that are too involved for the PCP? So it sounds like he might be a better fit than a Family doc. Let us know how it goes!!! 

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  • 3 weeks later...

Sometimes my symptoms were like you described and we could not find rhyme or reason to it then my son who was a weatherman with the military asked if I considered the barometric pressure and other weather conditions.... that was part of my problem. Good luck hope you feel better

 

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  • 2 weeks later...

A sort of a negative update: I tried abdominal compression, almost by accident (I was sitting in an odd way squeezing a pillow  against my abdomen and tensing my arm muscles and noticed I suddenly felt better). It worked twice. 

When I tried it on a third day, I got the same kind of headache that I got when I persisted with the salt & water loading as described above. Sigh.

I am now trying raising my bed head. One night so far (last night). Was a bit uncomfortable, but only because of the angle. Did not feel any other effects. Am waiting to see how it goes. I usually feel rotten in the morning because of a different medical problem (failed bowel surgery) and poor sleep because we are having noise problems at the moment.

The physician has not responded to my referral. Don't know what's going on there. Will have to phone. Hope he hasn't written me off as a nuisance/mentally unstable. This is always my fear when pressing for answers. Argh.

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  • 2 weeks later...

Another update – nothing of significance to report yet

Raising the bedhead seemed to help on the first two days, but the third day I felt a bit shaky (not a normal symptom for me). Put the bed back down and the feeling went away. I think I need to raise it more slowly and gradually.

Having small alteration/painting done to house and currently sleeping on different bed that can't be raised, so will have to get back to that experiement when I move back into my bedroom.

No joy with the physician – appointment was given too late to be of any use (only a week before dysautonomia specialist appt in August) so I cancelled it.

Am now hoping to get on to local cardiologist to give me at least moral support until August.

Found out yesterday that a cardiologist visits my GP fortnightly to see patients!!!! Unbelievably, even though I have been banging on about orthostatic intolerance for one year? two years? I'm losing track – none of the GPs ever suggested I see him or consulted him about my symptoms.

I have been feeling so rotten that I have asked my dad to step in and advocate for me, not on the medical details but on the management and support that I need and haven't been getting. I am so tired of being let down that these days I respond with tears of despair rather than assertive efficiency and "moving on".

Am seeing yet another GP. He seems okay so far. Will see how he does with getting cardiologist on board.

Am hoping to wangle temporary IV fluids from cardiologist to tide me over until I see the specialist. Maybe once a week if I can convince hime and it helps. I can't take feeling this bad every day for another three months.

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