Getting Help From Doctors

[Janey]

I have my POTS Doctor and EDS Doctor,my gastroparesis specialist , my bladder doctor and my GP (I think those of you in the USA call this your PCP?) but I'm finding it so hard to get what I need from them.

It's very difficult to tell with some symptoms whether they're POTS or EDS - for eg, motion sickness, sometimes I feel dizzy because I can literally feel the blood being drained out of my brain when I'm riding in the car, and other times I hear that bad motion sickness is caused in people with EDS by the sensitive bones behind their ear moving around. My EDS doc considers this a peripheral symptom (even though it causes lots of problems for me) and therefore tells me to go to my GP to get a prescription. I go to my GP and ask for the prescription and he thinks I'm mad asking for all these pills when I KNOW for a fact he doesn't understand POTS or EDS. He said to me the other day "EDS just means you're flexible, it doesn't mean you need a whole pharmacy at home."

Another eg, who do I go to for hormone problems? Sex drive problems? As they originate from Dysautonomia, I assume it's better to present them to a Dysautonomia specialist rather than an ordinary GP?

How do I find a Doctor who will take the WHOLE me and all the symptoms that I get and help me with them all? Is the neurologist supposed to do it? How do you all join up your symptoms without having to educate every Doctor on the other aspects of your disorder? They just don't seem to communicate about it! I assume I have comprehensive medical notes, but they obviously don't read them.

Janey

[firewatcher]

You need a central point of contact. My primary Doc is mine. Every test result that comes in, he gets a copy...even if he doesn't understand it. My endo is also very good at being top dog. If none of your docs are willing to be "central command," you need to find one. It can be your GP, OB/GYN, neuro, whatever. I would approach the doctor that you get along with the best and ask them to be that for you. If they are unwilling, find a GP who is willing (usually a fresh-out-of-medical-school type.) Good luck!

[maggie]

Since I only have pots, my neuro is the main dr. Any medical procedure always goes through him first, he decides what course and meds I go on.

Maggie

[janiedelite]

I understand how difficult it is to coordinate medical treatment when you have numerous complex conditions. However, it really does work out best when you can pick one doc who is willing and able to coordinate your care. POTS is my primary diagnosis, and my PCP is willing to do all the managing of minor issues and referring to other specialists. Then she has their records sent to her (or I bring them when I see her next) so that she always has the big picture. I have to have a central physician because I need regular updates of my condition in order to maintain my long-term disability payments. I'll be going to see a new GI doc next month, and will give my PCP those office notes at our next visit in November.

My mom has a rare cancer called carcinoid syndrome for which she sees 2 oncologists (one local, one we travel to see), GI doc for short bowel, neuropathy, an endocrinologist, gyno, PCP, etc.... However since carcinoid syndrome is her most central diagnosis she uses her local oncologist for referrals, prescriptions, insurance documentation, disability, etc. She could use her GP/PCP except he is afraid of trying to do much at all with her. So really, I think a willing doctor can always be educated as needed, as long as they'll provide the referrals and other communication that you need.

[Csmith3]

It is a different set up in the US which has more flexibility - here it really needs to be an exceptionally good GP. And even with an excellent GP who has capacity to give this level of service, it all takes time as they get to know you, the illness and who to refer to. No one will readily be able to answer all your questions because the knowledge of the mechanisms that cause the illness aren't fully known. Also, medicine is just too complicated for someone to have a specialist knowledge in everything, so the GP is the generalist to manage you as a whole person.

If you are thinking, Cath you are in another world looking for that excellent GP with spare time.....well yes, the reality is it's probably you that will have to manage the condition and manage the GP, at least in the short to medium term. You are both going to be learning for a while unless your GP happens to have other POTS patients.

If dysautonomia were more common (like diabetes), there would be a hospital clinic with a coordinated service between departments. But for most less common conditions, it's a case of a set of specialists all trying to do their best. The cross referrals are all part of the package, I'm afraid, but you do need to start with the GP to start the process off.

I tend to see one specialist at a time, get all the testing up to date, try a few medicines and find the best treatment plan. Then I leave them alone and accept that the treatment will do for a few years. Next time my health is on a bad patch, I'll sort something else out and see a different type of specialist. This might sound crazy, but if you find you are in this for the long term, it gets tiresome going in and out of hospital and trying new drugs and sometimes it is best to just accept what you have rather than constantly looking for new fixes and improvements. It's also important to only vary one thing at a time in order to assess whether it is improving your health or not.

You will see lots of people on here telling you to keep copies of any letters you get with test results or diagnoses. It is good advice. It is also wise to take a copy of these to any new doctor you see in case your GP doesn't send them with the referral. It can save a lot of time and repeat testing.

Good luck!