Visit to the doc......when you realize things aren't that great.

hello guys, firstly i hope you are doing the best you can.

i had a visit with my GP today. as usual, we go over recent lab work, doctor's appointments, and general stuff.

as we went down the long list of issues and went over problems, my doc seemed pretty down and frustrated. "you have diseases, conditions, and even a tumor we cannot treat." he seemed like a demoralized foot soldier.

despite the numerous experts i've seen, i'm facing some significant issues that have no solutions, just treatment and over time will get worse. otherwords not a positive outcome....

it's easy to be the patient, IMO.

i think my doc feels outmatched. he is a family doc with an extremely complex patient that he does not have the training nor education to really, fully treat. when he looked at some raw test data, i could see that he looked like a kid in a math class that had no idea how to solve the math problem he was looking at.

i gave my opinions on some of the things we've gone over, and i could tell he was frustrated. it's like trying to fix something and it won't work.

at dinner, my dad and me discussed this problem. it's clearly a morale and leadership problem--i need to give my doc a pep talk. he has done good things, and has fumbled on others. i know he's had some problems with some other docs in terms of agreeing on problems.

since most of my physicians are at an entirely different hospital system, it makes it hard for him to keep in the loop--that's my job (but really shouldn't be).

giving your doc a pep talk sounds absurd doesn't it? especially when you're the patient.

i'm glad my graduate thesis was on a topic not unlike this. the thesis was on the performance of employees during tough ecnonomic times. this time, it's the performance of a doc with a patient that they can't do much for.

i have too much time and energy in the doctor/patient relationship and switching to another would be difficult to say the least.

this is strange. i know how to help make the problem less difficult to manage and it's going to take some time, but it can be done. what it comes down to is i need a family practice doc that is an expert in almost every field of medicine. that's utterly impossible. i don't need an ob/gyn (ha).

i know there are a couple people on this forum that are in a similar quandry. each turn leads to a brick wall.

the only way is to use brainpower.

Lots of times I think of our GP as our "gateway" to getting bigger things/doctors/tests done. Our GP is good about letting us at least test for things - sometimes the neuro seems reluctant for some reason. And like you, the GP is someone you can usually get to quickly when needed. I wish you luck with your pep talk!

Our G.P. is very compassionate. He is not afraid to prescribe. He trusts us. We have earned that trust. Believe me, it is major trust.

As far as the complexity, we've gone to some big places, and Anna has had several complex surgeries. And we keep going to new docs and to new places. It probably is VERY unusual for our G.P. to see this in his practice. I'm sure he does not have any other patient like Anna with these rare conditions who has traveled so far and so long for treatment (completely unsuccessful, at this point).

I do wonder if he gets weary of it. I have startled him many times, I know, by saying we are now going here or doing this. But every time we do something, it seems--some test or some surgery--there is a surprise. It is never what we think it will be. So I feel justified in continuing on in the fight. We've had too many surprises to ever think Anna is on a "normal" path for her diseases.

We continuously hear from the experts even, "She is so complicated!"

And I think, "Who am I to figure this out? A mom with no medical training!"

I CAN'T figure it out, and the best of docs can't figure it out. And I'm sure our G.P's head just spins sometimes.

Still, he does an amazing job at keeping Anna and I sane. I always say I would be in the funny farm if it weren't for him. He is the rock we need. And either Anna or I tell him in every appointment how much we appreciate him. He has an amazing gift of helping us stay grounded and feeling like we can survive this.

He once told me he has a specific way of keeping his patients calm during labor. I know he uses that with Anna and I also. It's the way he talks and interacts with patients. It is very unique. We are so blessed to have him.

Cheryl

I'd like to chirp in and say how lucky you are to have such trust in your doctors.
I do not have a primary care physician. All I have is my new neurologist.
I stopped visiting the doctor when I could no longer see my pediatrician.
I only went when I had an emergency or when I needed prenatal care.

Now, all the sudden I get these crazy migraines every day. I don't know why this happened,
but one day I got a migraine, and said okay. Then the next day, and the next day.
So on and so fourth, so of course I made an appointment and you all know how it goes from there.
But here I am on these medications that I concider to be pretty serious since all I've ever taken
is some pain pills for tooth problems and vitamins all my life. The guy who is telling me
to take these things that are interfering with my life is some man I've never met before
who has a fancy desk and very dyed hair.

I find myself double checking what he puts me on to make sure its right for me.
I get so nervous about his medical advice because I like him during the appointments but
all the prescriptions he's giving are new, which may mean he's just getting kickbacks from
pharmacutical companies. I don't like motives like that, so here I am doubting everything.
I wish I had someone to trust with a medical degree that I could call at a moments notice
to run things over with.

Even if it meant I had to occassionally do a pep talk, or whatever means necessary, I'd do it.
A doctor that sounds like a friend, now thats one valuable resource.

I am so thankful that you Marc and Cheryl's dear Anna have great PCP or GP's on their side.

I did at one time in my migraine journey and it was so very valuable. That trust you spoke of Cheryl was there. He facilitated a lot of things others weren't willing to look into at that earlier stage of 'figuring out'.

Now I have to say that a good person like that is what sorely lack. I had it somewhat when I was in So. Calif. ......although he opened a lot of doors for me and trusted me with big meds.....he was still not my PCP of record and that seemed to pop it's head up often.

Now I had to begin again with finding and sorting out care in another part of the state. I have a primary care Dr. that I do not trust one bit. She had to be pretty much 'called out' by higher up depts. and told to treat me as I had been being treated within this same system. I had documentation going back 20yrs that proved my responsibility and history.

I pretty much have to tell her what I need or ask her leading questions to get her down the path I know I need to be. How pathetic is that?!?! I recently had a GYN issue that came up. I saw a GYN and not my primary. He said some things she prescribed were contraindicated with the BCP's I was taking and other things.

I questioned why my PCP didn't take all my factors that she has before her before Rx'ing the Zocor........the one he wanted to change things around for....in order to accomadate it and keep me from a higher stroke risk.

I am rambling I think...............but the whole point was........the importance of the good person at the 'lead' is ever so valuable and good to have. I miss it and hope to find it again. For now....I have to more than ever be my own advocate.

So thankful you are who you are Marc.........so that you can navigate your very winding road.

thanks kids.

cheryl, your doc sounds a lot like mine....pretty much let you be at the helm and steer the course. not exactly the best (we're not docs) but we have to do what we can. anna has such a difficult case and has gone through so much....it's quite tough. i get into hospital systems and list my family doc as the referring. i can make a call and get in much faster than an office can. you just have to know how to call, and how to ask. i'm sure you know the drill.

ajr, i appreciate your kind words. your doc sounds helpful. the gp doesn't have a problem with ordering tests within his scope, but some of the riskier stuff (anything invasive) always goes through a specialist, as it should. the doc is helpful with meds.

hi lovegia. i've been on the forum for a long time. migraines at one time were a terrible part of my life, but they are treated. i no longer have a neurologist--haven't for the last 3 years. i've had more luck with my family doc and other specialists. i have many health complications stemming from genetics--mainly cardiovascular problems.

i can understand the concern with a new doc that pushes a lot of brand name new stuff. there are a lot of tried and true med combos that neuros usually trick with until they change regimens. it can take many years to establish a base of meds that helps. all the stuff i take for my heart help my migraine problem.

i have had to fight tooth and nail, claw, and leverage through a few hospital systems and use all my tact and skills dealing with like i posted earlier--just about every doc except an ob/gyn.

migraines now are a biproduct that i must deal with but they aren't the worse part of my life--as therer are many, many causes of migraines. if i stop taking my daily meds, i'm toast. srs.

mianna, i know you've had a rough go. i hope you can establish a comfortable base. it is hard to trust a doc, and it is hard for them to trust you. i think we've all gone through some serious things.

keep up the fight. i will play golf once again! LOL

I just switched GP's for my youngest son. We've had the best for him, and we just had the worst.

He has a extremely rare chromosome deletion. When he was diagnosed 18 1/2 years ago, he was one of only 15 documented cases worldwide. 3 of the cases had died in infancy due to heart abnormalities, so there was little documentation.

He is missing genetic material from the upper arm of his 8th chromosome. His disorder is simply called 8P-. (the P stands for the upper arm of a chromosome, Q is the lower arm). At least the 5P-'s have a name of Cri Du Chat Syndrome.

Because of the rarity of his disorder, I have to fill the GP in on what we need to be watching for, what is typical of his disorder. Like Cheryl, I had to become an expert on genetics, with no medical background. I can translate karotypes now, understand language I could never even pronounce before. For seven years I was even a guest lecturer in our local High School's biology class when they were studying chromosomes.

Because of the Human Genome Project that maps each gene on a chromosome we are becoming more aware of what each missing gene represents. But, my son is missing thousands of genes and when you think that each gene is represented in every cell of the body...well, it's mind boggling to try and keep up with.

This is the info I need to pass on to his GP. He went to a new GP last month and I felt very comfortable with him. He openly admitted that he would have to do research on his condition, but also stated that he looked forward to learning more about it. He did not have any arrogance at all.

The last GP we had tried prescribing heavy duty anti-psychotics because my son was getting angry in class at the end of the day. Besides being mentally handicapped, he is autistic and is bothered by loud noises. He had PE at the end of day. Hmmm...perhaps just taking him out of PE? Needless to say, he did not go on the medication. I took him to a specialist who simply changed his ADD medication to a time-release so it wouldn't wear off at the end of the day and we removed him from PE. Problem solved.

It is unfortunate that we have to be so vigilant and knowledgable, but once you develop a good repetoire with a primary it is worth it. I'm glad Marc, that you have someone you're so comfortable with.

I am grateful that we have the tools like the Internet so that we can educate ourselves and thus protect ourselves and our loved ones.

Hoping you can get back to the golf course soon. I tried taking it up a couple years ago, I thought it would relax me, but I was told that swinging the club around my head while loudly cursing is not good form . Anyone want to buy a set of almost new women's golf clubs? I'll throw in the shoes!

Charlotte

I know how you feel Marc! I've had many GP's over the years, some really great and able to accept their limitations but work with me, others who've got annoyed because they haven't got a clue what to suggest. It does take a lot of time and energy building up that relatinship and I would certainly stick with your plan and help him through it!

At the moment I don't have a GP who knows me. Having moved areas and lost some great ones I finally found a good one here, only for him to go and retire His replacement was amazing, and I had really high hopes, but due to some practice politics he left and I've just seen locums since. I'm hoping things resolve themselves soon, it's really exhausting explaining your whole history repeatedly even when abridged and to the point.

Good luck

Amy

Hi, Marc. I understand your frustration well. I have 3 seperate conditions (chronic migraine, Celiac disease and Chronic Lyme) that seperatly are difficult to treat. Together it takes more than one brain. I have been seeing my PCP for a total of 12 years. She is a Family practice Dr. who now only sees Lyme patients.

I call her my angel and I truly think of her as a friend as well as my Dr. We greet with a hug every time. I saw her early on and was impressed with her mind. She is always researching and never gives up. About 10 years ago, she moved further way. My kids were young and the roads werent great out that way. I went through a series of Dr.s including many Neuros.

Finally, I tracked my old Dr. down and went back even though it is a 45 min. drive and I have to go every 2-3 months for the Lyme. But, she treats everything for me, mental or physical. She encourages, scolds gently and most of all listens! She has chronic Lyme herself, which almost killed her, but she never stopped working. She has so many people who depend on her. I still do a lot of research on my own to discuss with her.

I bring her baked items since she is on a gluten free diet as well. Several times she has gotten teary eyed over this since she knows how limited my energy is. I just want to let everyone know that there are intelligent compassionate Dr.s out there. Each one of us deserves to find one.
Hugs,
Cindy

It's so nice to have a GP who you know will work with you, and you won't scare off by bringing up info you've discovered by either research or personal experience. Both my PCP and the PA I usually see have changed practice locations, to one that is very hard to get to for me, so I switched to another doctor in the practice where I chose to stay. His nurse comes in and opens the e-file and the first remake she made was 'WOW! You're on a LOT of meds aren't you?!?' Yes, I am, but I feel better than I have in years, and am finally losing a little weight, instead of gaining while eating next to nothing (I'm hypothyroid, among other things).

I went in 2 weeks ago for a sinus infection, and the doc gave me augmentin, which usually isn't strong enough, and didn't trust me when I stated it. I took all 10 days worth, dealt with the big D and the girlie issues it gave me, and still feel like SH1T, so I went in yesterday and still have a sinus infection...he still didn't break out the big guns...AARGH!!!

I'm on another 10 days of a mild to moderate antibiotic, which may or may not kick what I've got, rather than giving me 14 days of the medicine that I know will kick it, and I won't have trouble while I take it. It's enough to make a girl want to scream...which I think I'm doing right here, right now.

In short, if you have that relationship with your doc...love it, and them.

No I am not losing hope that there is a successful treatment for you Marc.
You just had begun the new tests, and we'll see what these will show. Maybe this new direction will bring the long awaited breakthrough - I am keeping my fingers tightly crossed. always!

Risa

Hey Marc,
Gosh, your poor body...Hoping that your pep talk goes well with your primary care physician !