Disappointed after visit to a new doctor

[yogini]

I went to see a new doctor today that had been recommended to me by 2 different people, one with NCS and one with SVT. Both said he was very knowledgeable and nice. I haven't had a good doctor to guide me the entire time I have had POTS, so I was excited at the idea of finding a new doctor. I knew I should not have my hopes up. I went to see him today. I left work early and I was really disappointed. I think he is very nice, but he didn't seem to know much about POTS or have much to offer in terms of my treatment. I think he knew more about NCS than POTS, because he kept asking me about my blood pressure, and told me I should not be taking atenolol because it wasn't good for my BP. Well, POTS is more about tachycardia than BP issues and atenolol helps to control my tachy. My BP is fine, if anything on the higher side these days. Not to mention that I tried to go off of my atenolol a few weeks ago, and I am now officially feeling worse than I have in a year. He also told me that he was surprised I was not better, because most people either keep getting worse or get better in 6 months to a year. Really? I should introduce him to all of my friends from DINET!

I am used to having good doctors in the past. I have seen several doctors since I have gotten POTS, and none of them have really been able to do anything for me. Since two people told me that this doctor is good, I just think it's POTS - nobody seems to know enough about it. I just really wish I had someone to turn to that understood the condition and what I was going through. What am I supposed to do when I am not feeling well? I just have to grin and bear it. Like many of you, I feel like I've had to figure it out all by myself from reading on the forum and other websites, and I am not a doctor. I am lucky that my rough spots are not so bad compared to many others. Because going to all of these doctors over the years has been big waste of time.

Sorry for venting, but I know all of you would understand. Normally I deal with things OK, but I am just so tired of all this.

-Rita

[Guest Belinda]

All I can say is that I agree these docs need to figure this stuff out...sorry for your troubles.

Belinda

[halmad85]

I'm so sorry you having a hard time finding a knowledgable doctor. I know how hard it can be (I'm going through the same thing). I haven't been able to find a doctor that knows anything about POTS. I hope you find someone soon that understands and knows how to help you.

Hugs,

Jen

[gdomaracki]

I understand your frustration, and I'm sure we can all relate. Finding a doctor that knows anything about pots is one in a million. Have you tried researching a doctor in your state here on dinet? That is what I wound up doing and i'm glad I did. I am now seeing a specialist in PA that was actually trained by Dr. Grubb. And the nurses there were SOOO understanding, i thought I was going to cry. I do hope you can find a doctor that has the knowledge in our illness to help treat you.

Nicole*

[Poohbear]

I'm sorry for your frustrations; I really do understand them.

My experience is that most Dr's don't know about POTS and most of them do not know how to tell the difference between NCS and POTS. They certainly don't know how to treat them both!!!

THe only thing I know to tell you is to keep doing your own research and maybe this Dr will be willing to educate himself? Maybe you can provide him some literature on the topics??

I'm sorry you (and the rest of us for that matter) have to go through this!

[yogini]

Thanks, everyone.

I have gone to a few doctors on the Dinet list. The ones I have gone to don't know that much about POTS - the one that knows the most is lacking in bedside manner. Unfortunately there aren't great doctors in my area - I have written back and forth with a few people on th forum who live nearby. The worst thing is that all of these docs keep telling me to go off my meds and I have tried that - I really have, and I'm just not ready. It makes me feel like I have failed and I need a doctor that supports me instead of trying to push me beyond my limits.

[Guest tearose]

It is awful when we try so hard to find a doctor we can work with and get disappointed again.

I am sorry for you.

Please regroup and try again. You are right to want a local doctor who can help you, talk with and explore things regarding your care and treatment.

I had to find and "groom" my pcp to be my POTS dr. I still have visits where I gasp and say "what was he thinking today?" but then, I pick up the phone we discuss things. He appreciates the open communication and has come to understand this syndrome and me! I see him as needed, which is all too often (once a month average) but in the past year I have made overall incredible improvements!

I want this for you too!

Please heal from this disappointment and get right back to looking again.

I think you will be so relieved when you finally find the right doctor!

warm regards, tearose

[Evie]

Sorry that you are disappointed, It is so hard not to get hopes up and it hurts so much when it does not work out.

*hugs* It must be very frustrating

[Ernie]

Hi,

I understand your frustration. I mainly go to 2 hospitals: one give me medication and the other tells me to stop my meds. I get so frustrated because all I am asking for is a better quality of life. I think that most doctors don't know what to do with us so they play with our meds to "pretend" to do something.