Concierge Doctors

Holy cow, my brain is getting fried. Lord knows what my liver is looking like. So far all I hear is "oh, some things are high, but nothing to worry about."

If that is the case why did I miss a very much anticipated interview of a concierge doctor????? I even had it on my Iphone calendar. Luckily they were very nice about it and rescheduled me for Monday. At least I have more time to prepare my presentation.

One of the first things I will say to the doctor is, if you have to look up what TN is then, than?...whatever..you are not the doctor for me.

Power point presentation with video at the end. Not a long drawn out thing but if the doctor doesn't like it I will keep my extra fee and find someone who will be able to deal with my requests and pay them the extra fee.

Basically my points are as follows:

1) I am seeking a doctor, yada yada see above, 3rd paragraph

2) A new doctor to spearhead my new medical team. (I hope he is a sports enthusiast.) Responsible for coordinating my medical care. Liason between all my doctors and hospitals. Ability to recognize when meds from my severe bipolar 1, ADHD, severe anxiety disorder contradict meds for my TN and will alert me.

3) A doctor willing to listen to ALL my concerns and work WITH me to put the puzzle together.

4) A doctor with an office staff that is PLEASANT!!!!

5) Is it true that I will have your attention 24/7? The home visits, are they part of your service as mentioned with other concierge companies?

6) What is your ability regarding paving the way for ER visits IF I ever decide to step foot in one of those places again?

Sounds like a dream, we shall see.

Regards,

Phoebe

Sounds like you have a realistic agenda, Phoebe. Do keep us informed of the outcomes in your first interview. One question that is implied by all of the others, that you border on closely: "What is your attitude or approach toward including me as a knowledgeable member on my own treatment team."

Go in Peace and Power

Red

Absolutely. BTW, I missed the first visit. :( I thought it was at a different time. I HAVE TO GET OFF THESE MEDS.

Rescheduled for Monday.

good luck on monday phoebe, i know you have been through so much recently x

Hi elstep.

Thanks for the words of encouragement. Group, I feel a little guilty after reading about some of the other trials and tribulations people are having. Many of you have not only TN but other disorders. (Yes, I know I have other disorders as well, but not "pain" producing orders). Then gain, my other disorders have produced great "pain". Okay, I'm not feeling guilty anymore. Uh oh, am I about to go into a bipolar phase? Perhaps. I was up almost 15 hrs working on a painting. I must be getting better though, not 36 hrs like the work I was doing to finish my website. www.phoenixrising-up.org)

Seriously though. If I have to go through the next 30 years of my life functioning at the brain capacity I am, at then no thank you.

Also, the twitch in my hands is a bit of an issue. Has anyone had this: your working at the keyboard of your cell phone or puter and your fingers seem to have a mind of their own when you finish typing. My hands just want to type another letter! The only way I can stop this is to sit on them which isn't so great when you need them to type :( Can you imagine this issue might cause, oy.

I made application to the for SSDI on the phone last night. I think I'll mosey on over to that forum for the rest of this message.

Regards,

Phoebe

Hi Phoebe,

Your plans rreally do describe the perfect Dr. but don't be diappointed if you get an imperfect Dr. No one is perfect. Its a different world now. I have not found such a Dr. since the 60's. You might even face some harsh doctors. I got so tired of medical abuse, I just wanted to die rather than having to go back to another Dr. who would call me names and tell me I'm lying, when it was HE who didn't know what he was talking about. It was like having an abusive husband, but I couldnt' get away, because I will always need medical care. Finally, right at the perfect time, I found my female Dr. and the abuse stopped.

I have learned that I am the one who has to be my main caretaker and researcher because no Dr. is willing to take the time to research for me. They just don't care that much. When I find answers and possible treatments, I take them to my Dr. and if he/she is willing to listen to what I've learned, and try the possible treatments, THAT is a good Dr. He is a listener, and willing to learn new things about your condition. If he tells you not to tell him anything, head for the door, because you will be his servant, obeying his god-like ego, taking meds that may not agree with you, and probably has not researched the latests meds and techniques. Men are much worse at being willing to read articles you bring in or consider medications and info that you have studied. This website is a goldmine of information and alternatiaves. I have so many weird reactions to meds, and I've had doctors call me a liar straight to my face. That kind of Dr. is NOT on my "team". If I have a symptom, I would not waste my money and time to ask for his help unless it was real, and he should be willing to research why I have that symptom rather than call me a liar.

Dr. Welby from the 70's TV no longer exists. I think your expectations might not ALL get met, but I also think you have to aim high to even get some of those goals. Good list! I have been to so many dozens of doctors over the years and as time goes on, I find them getting more frustrated (stuck between what patient needs and what insurance won’t let them have), indifferent, unwilling to learn new things about how my body acts differently than others, and they listen for about 30 seconds before they have already decided which ONE symptom they “guessed” I have and will give me a pill for. I have a Dr. now who will listen to the symptoms because she is a woman and she can multi-task, but all the men have told me they can only deal with one symptom at a time, and EVERY disease has more than one symptom, so as soon as they learned I have a dozen symptoms, I was ushered out the door. They can't put the symptoms together to form a picture of a disease without listening to them all, and here, you have to make a second appointment if you want to mention a second symptom. Consider a woman Dr. for sure, I find them able to see the whole picture an multi task, and they don't treat women as badly as men do. In medical school they are actually taught to take men's complaints more seriously than women's, and treat men more aggressively. I have a book by a Dr. called "How Doctors Think" and it was a real eye opener. This Dr. got cancer, and realized how badly the doctors were treating him, then he wrote 2 books when he was recovering. By reading that book, it helped me know how to talk to the Dr. because I could see his method of thinking, and what his next step would be. I think you can get it by e-book as well for your computer or mobile device or Kindle. For those of us who have no choice but to have to deal with doctors, that book really helps understand how they think, and what they actually mean when they say this or that. It usually means something different than we laymen/women think it does.

Concierge Dr. sounds like such a wonderful luxury! All I know about it is on the show Royal Pain, but I’d sure like to be wealthy enough to hire one! I wonder if insurance covers a concierge Dr. at all. I’m so happy for you if you are in a position to hire one!

There are so many different meds for TN, and so many combinations that can be used together, and so many different dosages, don't give up, keep trying different dosages and different meds until you find something that works for you. My liver had trouble within a week of taking the anti-seizure meds, and my pain had stopped my heart more than once, so they put me on pain meds just to keep me alive. I am grateful for the quality of life they allow me to have. I have also had many periods of remission lasting for months or years. (Had this for 16 years now). How time flies when you're NOT having fun, and just trying to survive.

Keep us/me posted! I've never known anyone with a concierge Dr.! This fascinates me!

HAPPY NEW YEAR!
Sheila

Dear Sheila,

Thank you soooo much for your post. Wow, the 60s and Dr. Welby, I LOVED that show. I actually had a pediatrician I adored, she was with me from birth, Dr. Mitty. (She passed on many, many years ago but I can still hear her voice and remember her lollipops.)

Believe it or not a concierge doctor may not be as expensive as you think. I had a pretty good idea that our insurance would not cover it and that is correct. But that is just their main fee. In my case it is only $1,700 for the entire year. The insurance company will pay the regular charges at the regular amount. It is just a matter of finding a doctor, any doctor really on ones insurance plan. Expenses such as visit to the home will be additional, over and above the concierge contract and the insurance. BUT I DON'T CARE! If I never have to set foot in an ER again that will make me feel like I won the lottery.

Breaking the cost of the main contract down come to $4.72 per day if I did the math correctly. That is one large coffee, a pack of cigs for sure, almost anything we do daily and I WANT IT BAD BAD BAD.

Unfortunately there are not many in my area. Just a couple if that. I wish the Dr. I'm going to see were a woman, but alas, not the case. The GP the family has had for 15-20 yrs is a woman and is very open to suggestions. She will give each patient as much time as they need. However, getting her on the phone is difficult and the staff leaves a lot to be desired. She tries to lead the team but there are some cracks.

I want to read the books. I will look for them now.

Regards,

Phoebe

Carbamazepine ER 1200 per day (TN)

Baclofen 30mg per day (TN)

Divalaproex ER 500 per day (TN & OTHER)

Olazapine 15mg per day (OTHER)

Oxycodone 120mg (TN/WHEN NEEDED)

Citalopram 40 (OTHER)

If I had any reservations about hurting the feelings or upsetting my GP’s feelings they are now gone. Last night at around 11:30 I noticed my ankles were swollen to twice the size of their normal size. I tried to call my GP and did not receive a response. Yes, it was 11:30 on new years eve but it wasn’t like it was midnight yet. The pharmacy and the papers that came with my Percocet which is what I think caused the condition said call the dr. Immediately If swelling of the ankles appeared as this could be a serious side effect. This is exactly why I want a concierge doctor. The answering service told me to stop the medication. Since when do answering services give out medical advice? At least this morning they don’t lookas bad. But I have a few questions. Does this mean I have damaged some part of my body like the liver pperhaps? What other pain med can I try? Does this constitute an allergic reaction? What do I do when I start having pain which usually develops into full blown pain if I don’t have pain meds on board?

I cannot tell you whether or not you have damaged your liver Phoebe. My gut instinct is not by a few doses of a med. A simple blood test can give you the answer. I have had problems with my liver which have been diagnosed as connected with Tegretol. This is very rare so please don't panic. With help from my GP and Liver specialist I now live a boring low-fat, low salt, no soda's and very small amounts of alcohol on special occasions life style. This is all done with their approval, recommendation and help and should not be undertaken without medical advice, it differs from patient to patient. However I have been able to counteract the effect that Tegretol was having on my liver by adopting that boring diet and for me it has been worth it. I went from feeling ill and having every virus on the planet lay me low to someone with a spring in their step and most people comment on how well I look now. I did look pretty rough at my worst!!! LOL. please don't panic, take medical advice when it becomes available and keep in touch.

Oh boy. You mean it could be by Carbamazeipin and not the Oxy? Now I am really worried about what to do. I have been in the Carb for a month or so. I wonder if I should take my doses today. I wonder if I should try my GP today? If it is a Carb. problem should I just call the neuro? I wonder if I should just go to the ER and have some blood work done on my own? Should I just take my meds as usual and wait until tomorrow? Should I just take some of my meds? See what happens when your doctor does not call back? HELP!!!

Phoebe you should absolutely take your Tegretol today, it is VERY dangerous to withdraw from any anti-convulsive without medical supervision, it can bring on a seizure in worse case scenario. Nothing is desperate just yet, you may not even need a blood test, Wait until you can speak to a DR. It is very rare that Teg effects the liver, I am just not lucky. It is over a year since my blood test showed a problem and I have taken it all through that time. DON'T PANIC, it's wasted energy!! Tomorrow should be OK. Unless of course you can find someone to take your call today. Any withdrawal from Teg should be managed by a DR not you!! Please!!

Also I have no idea about Oxy at all, I have never taken that and of course I cannot diagnose you. I am trying to calm you Phoebe, sorry that I seem to be having the opposite effect!

Phoebe said:

Oh boy. You mean it could be by Carbamazeipin and not the Oxy? Now I am really worried about what to do. I have been in the Carb for a month or so. I wonder if I should take my doses today. I wonder if I should try my GP today? If it is a Carb. problem should I just call the neuro? I wonder if I should just go to the ER and have some blood work done on my own? Should I just take my meds as usual and wait until tomorrow? Should I just take some of my meds? See what happens when your doctor does not call back? HELP!!!

Hi all. Back from the hospital. Result: “I don’t know why your feet are swollen, sometimes when people get older…”

And this is just one reason I SWORE I wouldn’t go back. I should have listened.

Happy New Year

Jackie said:

Also I have no idea about Oxy at all, I have never taken that and of course I cannot diagnose you. I am trying to calm you Phoebe, sorry that I seem to be having the opposite effect!

Phoebe said:

Oh boy. You mean it could be by Carbamazeipin and not the Oxy? Now I am really worried about what to do. I have been in the Carb for a month or so. I wonder if I should take my doses today. I wonder if I should try my GP today? If it is a Carb. problem should I just call the neuro? I wonder if I should just go to the ER and have some blood work done on my own? Should I just take my meds as usual and wait until tomorrow? Should I just take some of my meds? See what happens when your doctor does not call back? HELP!!!

Fluid Retention? At least I am having a guess more then then ER did! Take Care , keep on with your meds, until you speak with your Doctor xx

The hospital visit today is a perfect example of how in the long run having a concierge doctor may end up saving a boatload of $$$ for the insurance company and myself.

Too bad the old days are pretty much gone whereas a more "low-key" exam would have sufficed. In the event the concierge doctor wanted more in depth and immediate testing at least there would have been have been MORE of a reason. And the hospital would not check my Carbamazepine level.

Oh, when I saw the hospital dr. was a young woman I thought this might be good. Unfortunately I got a not as bright, not as cheerful, female doogie howser.

Times sure are changing.

You got me wanting a concierge Dr. too. Found out there are no such things in Canadian socialized medicine. You'd hit the lottery here to find a Dr. who will come to your home. OH GOSH HOW I WISH I COULD STAY HOME INSTEAD OF GO TO THE E.R. I usually do stay home and suffer through it, but to have a chance of relief from a home visit would be so wonderful.

Jackie mentioned to you about liver damage. The most important warning and side affect of anti-seizure meds is that it affects your liver, but if your doc is on the ball and checking your liver tests, you will know if and when that happens. I think Jackie and I are the only ones here that I've met that had to stop tegretol/gapabentin/carbamazapine due to liver damage. There may be others, I just haven't met them yet. You are on a number of anti-seizure meds, so that raises the change of problems. You are one of the few I've talked to who will admit to using opiate pain meds. There is a group for those of us using opiate pain meds. Because of multiple health problems, TN pain has made my heart stop, so I was put on morphine just to keep me alive. When the pain gets worse, the danger gets worse, but by then I can't bear to even get to the E.R. and wait for 10 hours in a chair in the waiting room. I hope you find a Dr. you like.

Blessings, Sheila

Hi All.

Just returned from the interview of the concierge doctor.

PLUSES: The office is approximately 5 minutes from my house. Same day or next day appointments given. 24/7 availability, no answering services- If a message needs to be left it is left directly on his cell phone voice mail. Patient load maximum 300. (vs. 2,500 -5,000) Appointments at their scheduled times. House calls when medically necessary. Will come to hospital. Annual comprehensive health assessment including: Laboratory blood testing; chest x-ray; colorectal cancer screening; lung function testing; EKG; urinalysis; age appropriate complete physical. The co-ordination of medical team.

MINUSES: Apart from the annual membership fee, there is a question of how much my health insurance will cover. Will I trust the doctor? SEE BELOW

And this is what scares me off of this doctor: He wanted to know if I was in pain at that moment. I said no although earlier in the day I had a rumble. I showed him where and explained that my TN seemed to be moving around a bit. He IMMEDIATELY said that I didn't have TN then. He believes it is more of a TMJ thing. I explained to him that according to all my research it is very possible for the pain from the TN to move around and in what manner. He did say to be sure to get a bite exam from the dentist when I go for my full exam. He said if it is my bite I can go directly to Walmart and buy a bite guard to use in my sleep. This will also help with grinding of the teeth. (I don't have grinding of the teeth that I know of.)

So, although I will be sure to have the dentist do a bite exam I am a little put off about the not being aware that TN pain can move and often does. He says he doesn't mind learning things I might find in my research though.

I think I will hold off doing anything until after my dental appointment.

Regards, Phoebe

You need to see if he is open to learning new information. Most doctors DON'T know there are 2 kinds. Typical and atypical TN. Call him or see him again.ask him straight out if he is willing to take information from you that you have gotten from a reputable source such as the major medical centers information pages online, or even Red Lawhern's info in "Face Pain info" tab at the top of the page, and quote the source where he got the information, he might be OK. If he is NOT willing to learn the most recent information about a condition, if he's not willing to understand that you know your body better than anyone, and that everyone's physical problem might act a bit differently, he is not adjustable enough for you. Are there other doctors in your area that are concierge doctors that you could interview?

Sheila

Thank you Sheila for reassuring Phoebe on the liver thing. Why we have to be sisters on so much Sheila I just don’t know LOL x Phoebe, I personally would never pay for a concierge Dr who told me I did not have TN when YOU know you do. You are on a losing battle from the get go. I guess I am so lucky here in the UK as most of the things you list are available to me from my regular DR free of charge! Maybe the comprehensive annual check up is more than I get but for most of the rest…let us all know when you make a decision and all the best with it. J

I don't know if it is true of Tegretol, but Gabapentin can cause swelling in the lower limbs from water retention. It is a common side effect of that anti-convulsant. I looked at your drug, and it just listed the common side effects not a big long list like I found for gabapentin. I suspect that since they are from the same class of drugs, that it is possible that was what it was...... who knows for sure.

Then I googled oxycodone, one of the "serious" side effects listed was swelling of hands, feet, ankles, so on. So I would ask my GP, or whoever prescribed that drug about the swelling and ask them how "serious" it is and what causes it, and whether you should be taking the medication.

Oh and PS: who knows better about your dx -- the Mayo Clinic or the conceirge doctor? Um, hello! I will share with you that for two years before being diagnosed with TN, the doctors were telling me it was TMJ. I did not have any of the electrical shocks until November, nor the boring pain that I have now, but it hurt.... and it hurt BAD. They kept saying it was TMJ, even though I had not clicking or popping of the jaw. Now they are saying they were wrong and it was likely TN rumbling to life.

Our medical system is screwed up. They treat one symptom at a time, instead of looking at everything. For two years I was bounced around and around with TMJ and migraine dx's and treatments. Even ended up in the ER one time because they put me on a migraine medication that I was severely allergic too..... never mind the darn thing didn't work.

Anyway, were it me, I would be running like heck.

Do you guys have Nurse advocates in your area? They won't make house calls, but boy do they keep track of all the medical stuff for you and pave the way in medical situations.

My grandfather used one recently and is still using one for problems he was having. He started out trying to naviagate it on his own and just could not keep everything straight. This RN advocate has been AMAZING.... If I could afford one, I would be signing up.