I Am So Afraid Of Going To My New Pcp

[iheartcats]

I laughed in the poll for the POTS documentary: How to Lose a Doctor in 30 Days.

That is so true!

I've had a rough time trying to find a PCP on my new insurance plan in a new state. I've researched and called and hardly anyone is taking new patients. I was in tears at one point on the phone, and then hung up and cried. How stressful. The clinics I called kept trying to stick me with a Physician's Assistant as my primary PCP! I'm like...no, I have a condition that warrants a doctor. I'm not your annual physical/strep throat patient. But every place I called (I'd say 90%) said well you can see our PA as your primary, that's all we have. NO WAY! Can you believe this?

I finally found a newer guy in a practice under my plan who has decent online reviews. It was difficult to find him and now I don't want to scare him away. I've had 18 months of trial and error to get on a medication mix that works. I have a letter from my old EP saying what is working right now...my big fear is what if he doesn't want to deal with my POTS? What if he thinks I'm on an awful lot of off-label medicine use for a young person? I can't function w/out my meds. I can function with them. I've tried both ways. I need a doctor who's comfortable keeping my RX up.

Also. I need a couple blood tests that aren't normal every 6-months or so. How do I bring this up without him thinking I'm dictating what I think is right? These are tests I was told to keep current including my ANA.

Thanks in advance. I'm so stressing about this visit!

[firewatcher]

You go in, you tell him this is an interview. "I have a relatively rare condition that has been formally diagnosed, it is _______________. I can provide much of the information that you need and all the contact information for doctors who can answer many of your questions. I will answer all your questions to the best of my ability, I will comply with any of your requests that do not go against my previous diagnosis, I will do my own research into my condition, but I need a physician who will listen to me, use his/her brain and assist me in my medical journey. Do you want the job?"

[Rene S.]

You go in, you tell him this is an interview. "I have a relatively rare condition that has been formally diagnosed, it is _______________. I can provide much of the information that you need and all the contact information for doctors who can answer many of your questions. I will answer all your questions to the best of my ability, I will comply with any of your requests that do not go against my previous diagnosis, I will do my own research into my condition, but I need a physician who will listen to me, use his/her brain and assist me in my medical journey. Do you want the job?"

Brilliant, Jenn. If you don't mind, I'm printing that one out. Bravo! All of these doctors have egos the size of Mt. Olympus and want to be in total control. No one knows our bodies better than ourselves.

Good luck, Cat Lady. I hope he's willing to have an open mind and realize that you know what works and doesn't work for you.

Rene

[iheartcats]

You go in, you tell him this is an interview. "I have a relatively rare condition that has been formally diagnosed, it is _______________. I can provide much of the information that you need and all the contact information for doctors who can answer many of your questions. I will answer all your questions to the best of my ability, I will comply with any of your requests that do not go against my previous diagnosis, I will do my own research into my condition, but I need a physician who will listen to me, use his/her brain and assist me in my medical journey. Do you want the job?"

Brilliant, Jenn. If you don't mind, I'm printing that one out. Bravo! All of these doctors have egos the size of Mt. Olympus and want to be in total control. No one knows our bodies better than ourselves.

Good luck, Cat Lady. I hope he's willing to have an open mind and realize that you know what works and doesn't work for you.

Rene

Thank you so much. I'm taking this with me too!

[Maxine]

That's pretty sad that we have to fear going to a new PCP, but it's reality.

Fortunately my PCP has accepted me, and takes the time to speak with me about different options.

POTS is rare, but I notice it's being more recognized.

Having the EDS, enlarged right vertebral artery pressing on brain stem, pannus growth on odontoid bone, and cervical/cranial instability causing more brain stem compression-------------------And it's throwing doctors way out of thier little SAFE BOX-------------so NO HELP THERE!

I'm lucky my PCP has continued to try at the very least. I'm going through a rough time, as all of this has caused road blockes in getting my other health conditions under control.

Maxine :0)

[erikainorlando]

Maxine - you mentioned that POTS is rare...do you know the statistics of how rare it is? I've wondered this for a while.

Thanks,

Erika

[Brye]

After I finish this I'm heading for the "how to lose a doctor in 30 days" post. That sounds like a good laugh. I am so blessed to have a great PCP. Any problem I have that isn't being dealt with all I have to do is call him and he'll back me up. (You don't live in Arkansas do you?) My EP doctor was also wonderful and was doing everything he could to help until he retired in January. I understand the anxiety of seeing a new doctor. The new EP doctor that took over was bombarded by a double patient load and I don't think he had ever treated a POTS pt. My 1st appt with him he didn't even look over my meds or hx before walking in the room. He told me I was diluting my system with water and that gatorade was going to be the solution to my problems. I should try this and follow up in a year. (the gatorade idea was worth a try but didn't make a difference in the end) He didn't really review my history until I asked him for a work release. Then he decided he better look over the history to avoid liability if I pass out at work. He then proceeded to tell me after further review I was unfit to go back to work (computer chart audits ... not even E.R. nursing) After reviewing my chart I was a candidate for a pacemaker if I wanted. Sorry ... I just went into vent mode. I would make it clear that you're aware that these aren't common conditions but that you really just need someone who is willing to take the time to help you treat them. I know that EP doctor of mine probably could be very helpful if he was just willing to take the time to help. Half the battle is finding a good doctor who is up for a challenge. Good luck to you though. I hope you find someone who is willing to help!!

Brye

[janiedelite]

Hi Cat Lady,

Sounds like Firewatcher has you pretty well prepared! One thing I've found helpful with my doctors who actually do want to help me is I'll bring a copy of the my Mayo doctor's notes from my final appt with him. Do you have any doctor's records summarizing your symptoms, diagnoses, and even maybe a short article on POTS? I went to my gyno the other day to see if she'd be willing to manage me if I got pregnant, and I brought my Mayo doc's office notes with me. She actually read the entire page, word by word, and after she read it I could see she actually had a grasp on POTS.

Man, I just long for those days (pre-POTS) when I rarely went to the doctor's except for my yearly physical... things were so simple then!

I hope this new guy works for you!!!

[potsgirl]

This is terrific! They'll be a whole group of us going to doctors armed and ready. Anymore, you really have to be in charge of your health care!

jana

[EarthMother]

I love "The Interview". It leaves me feeling empowered as a patient. Deep bow to FW for the lightswitch in an otherwise dark Doctor's office.

I wonder though, would the Doctor also be left feeling powerful with a chance to really be an asset to this new patient prospect? Cat's situation sounds to me like a dwindling pool of possible PCP's. Which unfortunately does put the patient on the receiving end of "the interview".

Also, is this truly all that we want in a PCP? Someone who won't question our established routine or previous diagnostic procedures? It's ok if that is! But if that is true ... wouldn't a PA be an excellent choice?

If we have established prescriptions that we don't want to change ... blood tests we are committed to ... other "specialists" that we want to remain in the driver's seat ... then a "good" PA could be priceless. In theory at least, She/He may have the time to spend listening and reading through our notes. Each of us has educated ourselves on this disorder, we know it doesn't require a medical degree to understand ... just determination. My OB/GYN's office has a handful of RN's that handle all of the annual issues for patients. They are amazingly resourcful, have the full respect of the Doctor they work under and have been able to orchestrate blood tests, prescriptions etc. with ease because they are in locke step with the lead Doctors. If all we need our primary Doctor to do is listen and learn ... a PA may be an excellent alternative. All the resources ... without all the ego.

For my situation -- I've never been to Vandy or Mayo -- I need a PCP who will be not only my pivot person and go between with my specialists ... I need him (or her) to take the information that I provide and give back to me any new insights or understandings based on his established medical expertise. I want him to have good working relationships with cardiologists and neurologists so that he can refer me as needed to people that he trusts himself. I want someone who actually reads over my chart history to remind himself of some of my trials and helps ME to remember things that have worked in the past when I have too much brain fog to remember for myself.

In my case ... new insights and information are always welcome, even if it DOES look different from my current diagnosis or treatment plan. I've been sick off and on my whole adult life, with different names for the condition each decade. Sure POTS fits, it makes sense. But what if some day someone finds new information that also hits the nail on the head? What if, in my case POTS became a symptom and the cause is completely different than the treatments I was using indicated? Not saying iit will ... just that for me, I have needed to fine tune or jump ship on my healing journey, and my need for a PCP may look a bit different.

[mjan]

Sorry you are struggling so.. I know picking any MD is so important.

I switched jobs AND insurances. I had to start all over just while I was in the misdt of being diagnosed and undiagnosed with MR..Cataplexty and all the POTS symptoms..NO ONE knew what to do with.

I said a Prayer and asked for spiritual guidance.. in the name of my beloved mom and any and all who could direct me. Guess what? My NEW PCP not only knew about POTS ..her own mother had it and understood the delimma of no one knowing how to treat her..so she got me to a ANS doc.

AND I have had great PAs who got me into the best specialists

Trust.. prayer.. and guidance but oh yeah.. SOME MDs=Medical Deity

The BEST to you in your search

Jan

[firewatcher]

I have to agree with EM about the PAs. They could be an excellent option. They do have to have a doctor's oversight to operate and if it is anything they can't handle, they usually get you in to the doc pretty fast. As to the tone of initial post, it was meant to short-circuit any "google-chondriac" or "hysterical woman" thoughts by the doc. If he isn't going to work with you on your healthcare, then he's not the one for you. If the doctor later proves themselves by looking into your condition and offering advice that seems to make sense, by all means go with it! You just don't want a disbelieving doc changing meds that are working for you. Let us know how it goes!

As to being on the receiving end of "the interview" part, I have put forth that challenge to all my current docs very recently. If they don't want to take the time to "deal with me" then they really can't help me! They have to know that I am not the "normal" patient and be willing to think beyond the "normal" in dealing with me (like NOT freak out if I have a BP of 100/82!)

[potsgirl]

I'm also on board with EM and FW. The best, most understanding doctor I have is my PCP, who is a PA. She is willing to learn about my illness, spends a considerable amount of time with me, and is just truly a terrific person. My only grievance is that she's on the other side of town, after leaving the original practice she was with...but, she's still worth the drive!

cheers,

jana