How Do You Pick?

[firewatcher]

Fresh on the heels of my latest trip to Vandy, I went to my endo #1 to get some lab results and "report" back Vanderbilt's findings. I finally thought I had an answer and now I'm all confused and frustrated again , this doctor completely disagrees with Vanderbilt's findings and tells me that if I continue to see "other specialists" he can no longer be my doctor. He lays out his findings and explains them fully and has a counter-argument for every finding, even using Vanderbilt's lab values. Endo #2 has previously done the same, just like the endo at Vandy. I just want to put my fingers in my ears and go "la-la-la-la-la!" If I felt normal I would just stop and fade into obscurity, I really want to anyway. I have to make a choice now and don't know how to do it.

I have an appointment with my primary doc on Friday and I guess I'll work it out with him. I don't trust ANY of the doctors because they can't agree on anything and each sees something completely different! One says pituitary, one says thyroid and another says there are NO endocrine abnormalities, but I do have pineal and pituitary cysts! I know I'm a ten-minute blip in their schedule and once their write-up is done, I'm completely out of mind without a further thought....very frustrating. One even had the gall to tell me that researching all this takes up too much of my time! NO kidding! If they would do it, I wouldn't have to!

How do you pick one to trust? They seem to relish the doubt they can create in your mind. I am so tired of this!

[babettess]

I know what you mean!!!

I have been to the local university hospital where they did just a TTT and an EMG/Nerve Conduction Study and said you have POTS and sent me on my way. (Didn't feel too comfortable with their knowledge.)

So then I went to CC and they did a multitude of tests and gave me about 20 minutes of the drs. time and said you have Early POTS and Progressive Diastolic Orthostatic Hypotension and sent me on my way. (Didn't feel like they gave me enough time.)

So now I just went to a neurologist who knows about autonomic dysfunction and he says that he needs to do more tests because CC's tests don't give him all the info he needs. Well he spent 1 hour 50 minutes with me the first visit, then on my second visit (which was just yesterday) he spent one hour just looking over my records and tests. So I have been to one of the biggest centers in the US and was very dissatified with them and then I go to a neuro who has one employee in his office and I feel like he actually cares and knows what he's talking about. I feel so much more comfortable with this new dr. At least he gives me his time.... But yet its so hard to know who's actually right.

For me, at this point I'm going to go back to the neuro that gives me his time. At least I know he will have all of my information and I will be a name to him, not a number. That counts for alot with me.

Good luck with your decisions. And I would keep researching!!! It's sad that we all have to be our advocates.

Babette

[all4family]

Now Jennifer you have watched the 1000 dollar question! I don't know how to find a doctor you can trust. And I would have some serious concerns over a doctor who threatens not to be your doctor because you are going to others. I mean please did you say till death do you part? What is his insecurity? I was told if I didn't take the pills that I was being prescibed then a doctor would drop me. I went ahead and dropped him! I am sorry you are going through this, and I don't envy you. Making decisions for our health is difficult enough without DRS who can't agree. Good luck, and I hope you make a decision that you are comfortable with.

Hugs

Suzy

[cordila]

The doctor you trust is the one inside you. YOU live in the petri dish - not them. I believe we all have gut instincts on what is, or isn't, wrong with us - even if it's only on a base level. We may not have the education of our physicians, however we live daily with the effects of the disorder. Learn as much as you can, listen to your body, and if a doctor threatens to cut you off if you seek second opinions or alternative treatments then maybe they're not the right kind of person to be part of your healing team. How do you find a Dr. you trust? You trust yourself and invite the doctors you see to come alongside you on your journey to wellness. If they can't be team players - they're outta there. Nobody is Coach of your body but you.

-waterbaby

[EarthMother]

I let my primary care physician whom I have worked with since before my POTS diagnosis, pick my specialists. And if I am having a problem, he is the one I go to for clarification and as needed a new specialist. At times, depending on my insurance, I've asked him to recommend 'the best', who he would see perhaps if he was in my shoes. It may or may not be inside his own medical group. At times it has been things like accupuncture or massage therapy recommendations. Same goes for meds ... we discuss prescriptions as well as herbal medicines equally.

Ultimately, it is your chosen team of doctors who must be able and willing to work together in your best interest. When you think you have a team captain that you like, then let them help you create your dream team. It may be your PCP picks an endo and others ... or a new neurologist that makes sense to you picks your general practioner and others. The way that I found my current PCP was to ask my kid's pediatrician. I knew and loved this woman for years through three kids and when I was at my wits end, I told her my problems and said "I really need a good diagnostician. Who would you see if you were in my shoes?"

[futurehope]

Another thought... I usually get my neurologist's suggestions as to specialists "that understand POTS". Babette and I share the same neurologist. He's knowledgeable and I trust that he may have colleagues that understand POTS better than others.

As for a PCP, I'm going through some "iffy" signs from a new one I just went to. (I have a post on the subject.) I'm scared that he wants to pin a psych diagnosis on me because I "looked" down......translation, I was feeling exhausted, I was hypothyroid, I was fighting a tooth infection and I had just sat waiting in an office to see him. I called him on it and basically told him he was wrong about his impressions of a psych diagnosis.

I will be bringing corroborating evidence for my ANS dysfunction to my second visit next Tuesday. I will monitor his response.

I have no patience for doctors who see our symptoms and think there is an "easy" solution. We struggle daily and the last thing we need is a doctor who does not hear us.

Use your judgment whatever you decide. You are your own best advocate. We're here for you if you need it. Blessings to you.

[janiedelite]

I think it's smart of you to get your PCP to intervene. You have so many varying opinions. I totally understand your desperation to try to get to the bottom of things, and it must have been such a letdown to hear endo #1 give you that ultimatum. What a jerk. If he had to live in your body, you know he'd go to the ends of the earth and back to get answers. I hope your PCP can give you guidance.

[Broken_Shell]

Hi Jennifer,

I read your post and just went, "ugh! shame on those doctors!" I have had similar experiences, and I wish I could offer you good advice. Here is what is really frustrating... we go to doctors because we don't feel well. We all wish that we could just stop going and feel better, but that is not happening right now. Doctors are not gods and they do not have all the answers. If someone had the answer and offered you treatment that helped, you won't need to continue seeing other specialists. Doctors work for patients, and especially when dealing with educated patients, they are there to offer guidance and suggestions. No doctor should be so sure of himself as to be offended when a patient seeks another opinion, or a 10th opinion for that matter! Many doctors get irritated that I have seen many specialists and gotten many opinions, but if someone along the way had known what was going on and how to help me, I would have stopped after the first doctor. Getting multiple opinions does not make us "bad patients" or "hypochondriacs" or "complainers" or anything along those lines. If those doctors were put in your shoes, they would probably do the exact same thing, and it is too bad that they fail to recognize this!

I want to suggest getting another opinion, but that is probably not feasible. Are the doctors offering you different treatment options that are noninvasive? Is it possible for you to try the different options sequentially on your own to determine what seems to work and which doctor it would be most fruitful to follow with? Do you have a good primary doctor? What does he or she think about all of us?

I wish I could offer you more direction, but I will keep you in my thoughts and prayers that you will have wisdom and guidance to make the best decision.

~ Michelle

[Guest tearose]

The most essential important medical relationship to maintain and work on it the one with our PCP. I have made an appointment to just go in to work on better communication if it was needed and it always helped. Both of us, the PCP and me, are able to misunderstand, miscommunicate, make a mistake and we need to be willing to go through the easy and the rough times to have a valuable relationship.

Please try to cultivate hope and the determination to find and keep one PCP.

Sending you strength and support.

tearose

[Maxine]

It's so frustrating when you know how bad you feel daily, and know something isn't right, and then you have too many opinions on what's wrong----one of them being nothing is wrong.

I have experienced this, and I could mechanically feel my head subluxating from my neck at the very moment a neurosurgeon said my doctors were putting thing in my head. I almost wanted to say, "do you think it might be something to stabilize it, that would be nice". I really told him off, and the look on his face was priceless, as was his response.

If your PCP has been working with you, maybe you can come to some kind of resolution on what direction to go with his help. Try to make the most of your appointment, and don't walk away from him until you feel something will be done to help you in this mess.

Wishing you the best!

Maxine :0)

[firewatcher]

What STINKS about the whole medical mess is that the doctor who "knows" the least about POTS (the one who has said he'd have to dismiss me) is the one who has helped the most.

I do actually understand exactly where he is coming from, it is a legal issue, not an ego issue (but i am sure that is involved as well ): He would be responsible legally for my care as my primary endo, but if i start taking drugs prescribed by other endos that don't mix well or cause serious harm, HE is still legally responsible. I don't want to mix doctors any more than I would drugs! He is correct that i need a concerted, unanimous effort with a gameplan and guidelines, not a bunch of different doctors throwing drugs at the problem and none of them knowing what the other is doing.

My BIG problem is deciding which doctor to believe, since all four of them could be right!

Could it be pituitary/pineal and POTS?-----yup

Could it just be POTS?-------yup

Could it be thyroid and POTS?---yup

Could it POTS and some yet undiagnosed issue?---yup

This is more like religion than science! I never knew science was so subjective and open to interpretation or "belief!"

Tomorrow I will discuss it with my Primary doc and see what he "believes," and who he thinks I should follow........

[mjan]

Don't forget...MD = MEDICAL DEITY !! Well..for some anyway. Some just want the complications or competition..whichever..of several docs seeing you. I am seeing 3 specialists and they are ALL trying really really hard to figure me out. (good luck there)

I appreciate their expertise and for the 4 before them..they are all trying.

BUT I like that maybe...just maybe they are ALL right..ok. Well..then did they all run the same kinds of tests and get ALL different answers? Oh man..good luck.. keep us posted..and trust YOURSELF.. A little spiritual faith in guiding you to the BEST MD for you..would be nice.

Let us know.

Warmly, Jan

[firewatcher]

I should have renamed this thread: How to lose all your doctors within a week!

My primary doc said he could not legally be responsible for prescribing drugs suggested by an out-of-state doctor (Vanderbilt,) and that I had reached the limit of his medical knowledge. He also said that he did not believe that ANY of the endocrinologists were correct, that each was looking at the same lab results with a different perspective and seeing a totally different thing. He did think I needed to see a nephrologist before I changed any medications and that he would assist in getting that done quickly.

I don't know what to do, and he doesn't either.

Right now he's going to stick with me until endo #1 gets all his testing done and I see a nephrologist. After that, he may refer me to another internal medicine doc for primary care...we don't know yet.

I feel like a sinking ship and the doctors are rats running off...

[Miriam Poorman-Knox]

Is it possible to have a "conference with larry and moe"?? Even a conference call where you were present might help. Take

dh with you. I am in Hawaii caring for 2 roudy grandchildren. I don't get to check the forum much and its a six hour time difference 6 hours earlier. I think that should be a real opportunity, but this does happen often. Good luck Miriam

[Miriam Poorman-Knox]

Is it possible to have a "conference with larry and moe"?? Even a conference call where you were present might help. Take

dh with you. I am in Hawaii caring for 2 roudy grandchildren. I don't get to check the forum much and its a six hour time difference 6 hours earlier. I think that should be a real opportunity, but this does happen often. Good luck Miriam

[EarthMother]

"I feel like a sinking ship and the doctors are rats running off..."

I know the feeling. But let's flip this around and see if we can't wiggle a better story out of it, if only for our own amusement!

Your PCP took the time to review all of the notes and is feeling overwhelmed (and a bit dodgy of the legal implications). BUT he still wants to help get you in the right hands. The nephrologist sounds like a great next step. Let us set our intention that this new specialist will be a step in the right direction! As I mentioned before, this is about building your dream team, and at this stage you are still looking for your team captain. It might not be your PCP, it may be a new internest that he or your new nephrologist recommends. It will be someone that really really wants your case and wants to work with you and your other dreamteam specialists.

Hold on! This ship that is sinking wasn't seaworthy in the first place and there is a luxury liner just up ahead that is waiting to pick you up, give you a tropical umbrella drink and welcome you aboard. And this new ship will take you to the exact ports and places that you need to see! Send a post card, ok?

Holding the Love Boat vision for you.

~EM

[firewatcher]

Thanks EM, I needed that!

Maybe if I can get off the Klonopin I'll even be able to drink that drink with the little umbrella in it!

[Miriam Poorman-Knox]

EM you are the sage. Thank You this is such an important analogy. If I were the tatoo type that would be appropriate. M

[firewatcher]

Way to go "Dr. Moe!" I had endo #2's appointment today (the one who said I did not have DI.) He was appalled that my doctors would drop me when everything was still "unknown." He said that as long as Vanderbilt will prescribe the meds, he'll monitor them...leaving my Primary doc to handle "the normal stuff!" I'm honestly shocked. So now I have two options. He also said he had NO problem with me seeing two endos at once, as long as both were informed as to current treatment. But........I must go see a nephrologist before any medication changes are made. I am to make my decision after that appointment, when we'll know if my kidneys are healthy enough to handle the florinef.

Good news!

[Miriam Poorman-Knox]

Way to go "Dr. Moe!" I had endo #2's appointment today (the one who said I did not have DI.) He was appalled that my doctors would drop me when everything was still "unknown." He said that as long as Vanderbilt will prescribe the meds, he'll monitor them...leaving my Primary doc to handle "the normal stuff!" I'm honestly shocked. So now I have two options. He also said he had NO problem with me seeing two endos at once, as long as both were informed as to current treatment. But........I must go see a nephrologist before any medication changes are made. I am to make my decision after that appointment, when we'll know if my kidneys are healthy enough to handle the florinef.

Good news!

Yeah you!!! As far as the nephrologist goes I think its a very good idea. (thats who diagnosed me) she trained at Vandy....Aloha M

[potsgirl]

Congrats on the great news! What a frustration it is when docs drop you...I just had a neurologist refuse to even see me because they already had 'too many stroke patients' and I should go back to my previous neuro who never got back to me or carried through with anything. So....YAY!!

[janiedelite]

Yay!!! Congratulations! It seems like I'm congratulating you on your new baby or getting married or something... but nope, you've just found yourself a great doc who's not afraid to treat you! It's just as much of a miracle, in my opinion!

[jlmahon]

A GOOD doctor would welcome his/her patients to see other doctors. I wouldn't go back.

[EarthMother]

With fingers crossed as you chart out the appt. with nephrologist ... and quietly beginning to hum tune from Love Boat.