I'm Changing My Opinion

[Notgivinup]

I'm going to try to say this without bad mouthing him or his staff. I know he's a caring doctor, who's helped many, many patients. But apparently I'm not going to be one of them IDK.

I saw a doctor on Feb. 1st.

I've been waiting about 4 weeks for a return call from them. I've called about once a week every week, since my appt. with him. I've been pleasant and calm. Each time I get someone new who asks me the same questions over and over. Each time I explain my reason for calling, and ask if a nurse could please call me back. Every time they ask me for my phone number, which I've given them at least a dozen times. Once they told me my number had been disconnected! Ummmm no......it hasn't. Three times they had my meds messed up. Three times I corrected them.

Here's the back story:

On Feb 1st. after discussing my symptoms and talking about how I felt, my doctor decided to try me on provigil

He gave me a seven day sample . He asked me to call back and let him know how/if it worked for me. Within 3 days of taking it, I knew I couldn't. It made me EXtremely nauseaus. Yes, I only took it for 3 days, but it was at half dose, and I was soooo sick. Soooo, I called back, like I was told and asked them what my next step should be. No one ever called me back. Finally today I was so distraught I called again. Twice this week now. I finally got a call back from a nurse who basically said this......."Dr. said he would like you to stay on your current meds., he doesn't want to change anything, your still on ___,____,____,adderall, and ______." Ummm NO I'm not on adderall I've told you guys that at least three times, I cannot take it because it eventually causes muscle pains, hence the reason doctor tried me on provigil. "Oh, let me correct that on your chart."

Then I tell her, you know I'm still sick, nothing is better, isn't there anything else I can try? "Well, no not at this time, as you know this is a very difficult syndrome to treat and you're already on most of the meds we prescribe, just keep tabs on your B/P let us know if it changes." OF COURSE IT CHANGES I have POTS! I tried to explain to her how I thought maybe I needed a beta blocker and that I wasn't trying to play doctor, I just thought maybe it would help . I told her my quality of life *****. She didn't want to hear it, and innterupted me by saying again "this is a very difficult blah, blah , blah." I know it's difficult I've live with it for over 3 years! I kept my cool, I was friendly, but inside I was screaming.

I was told the doctor's nurse practitioner that I have the hyper form of POTS and possibly MCAD. However when I saw the doctor he said he thought I just had regular ole run of the mill POTS. Two different opinions. And one crazy, sick, angry, depressed patient, feeling like I'm not being taken seriously.

Help people. Am I somehow wrong here? I will NOT be offended, I just want to know what you all think.

[flop]

I'm sorry that you haven't had the response you were hoping for from the doctor's staff.

On a separate theme, you mention possible MCAD if you are having problems with mast cells or allergies then it is probably wise to stay well away from beta-blockers. Beta blockers can worsen allergic symptoms and even prevent epi-pens (adrenaline injections) from working properly if you have a serious reaction (anaphylaxis). This may explain why they weren't suggested as a treatment option for you. In the UK we don't usually have any contact with our consultants team other than when we are at an appointment so I am used to waiting 6 months to report back to the dr if a medication worked or not. It doesn't make the frustration any easier but I do understand what you are going through.

I remember reading that some people in the US send faxes to their doctors office. Perhaps if you sent a fax clearly listing your current medication and your experience with provigil then at least something on paper will get into your file.

Flop

[yogini]

I feel your frustration. There is not an excuse for the lame response.

I would not worry too much about hyper POTS vs regular POTS. The treament is not really different for either. As for MCAD, it is better to go to an MCAD specialist for proper diagnosis and trmt.

If you want to try to keep working with this doctor's office and they are not communicating well by phone, the best thing to do is make another appointment.

Someone the other day posted about finding the "perfect doctor." Many people here are looking for the perfect dr - and we are sick, who can blame us - but I am not sure there is any such thing. There is so much hope when one gest an appointment with a doctor, Vanderbilt, Mayo etc. that it is very easy to be let down - especially because treatment is trial and error and so it takes a long time to get to the right combo. These POTS experts are also not equipped to provide ongoing care and work out every minute detail with us, which is what we all really need. I hope you get the care you need and deserve.

[firewatcher]

I don't call my doctors, I fax them. That way there is no "he said, she said..." and the questions are clear and cannot be misunderstood. It also becomes a part of your medical record and often goes directly to the doctor's computer. It is the easiest way for me to communicate and not get the runaround from several different nurses all trying to get back with you. If the doctor does not respond, I fax it again after two days and then call to see if they got the fax. You can always keep upping the font size and putting it in all caps, its a polite way of yelling. I have become really good at being annoying.

You know your body better than the doctor, if it isn't working for you, go back to what was!

[Kitsakatsa]

I email my doctor. Last time I left a message with the guard dogs, they called me back and said that no, he could not perform my pap smear.

EW! He is my cousin! AND my initial message was that when asked about childhood illnesses, we forgot to tell him that I was a DES baby. I felt so violated just getting that mix up back! The ONLY way to have things communicated straight is by direct communication like fax or email. I keep the emails short and to the point. I always assume that they are being read by the entire office.

Also, I don't ever expect him to make any changes to meds or suggest others without sitting in front of him and talking face to face.

He doesn't have a PA or FNP, but if he did I would avoid them. If 4 years of medical school did not cover POTS, then 2 years of PA or NP school doesn't.

Before I discovered the email he gave me his cell phone number, but I would only use it in POTS emergency. It also worked well. Some doctors are open to it, most are not though. I think it was because I was family.

Before he gave me the cell phone number, I would write exactly what I needed down and take it in person to the office. That sounds like a pain, but I could not risk that he would get the wrong message (like above). If your doctor consistently gets the message that you are a whiner, you've lost them for good. The problem is, you may not be whining at all. It could be 100% the guard dogs misunderstanding what you are saying.

Doctor communications are a mine field that you have to navigate carefully. I've worked in medical departments and patients start to get a reputation. That reputation can really interfere with your care. When in doubt- set an appt. I never expect them to solve anything free.

I hope this helps.

This problem is probably more common among POTS patients than we realize. It's because you are so complicated (just teasing you)

Kits

[Kitsakatsa]

.

You can always keep upping the font size and putting it in all caps, its a polite way of yelling. I have become really good at being annoying.

I laughed so hard, I couldn't breathe! You are fantastic! From the sound of things, this poor one may have to send 1 word per sheet! That would be special...

[DESPERATE DEB]

Hi,

And there was I thinking that once I eventually am diagnosed, this nightmare might be over! This is really scary. I have seen so many posts on here and on other forums where even diagnosed sufferers are not getting enough support or the meds are not helping. I have no answer to your problem as I haven't even got to the diagnosis stage yet. All I can say is I hope they get this sorted for you, even if it means changing docs (again) or seeing what other people are taking and what works for them. I find it so unbelievable that so many people are suffering because there just isn't enough knowledge on this still. If you put in a Google search for it, pages and pages of sites come up so it's not like a super new thing so why haven't they sorted out the meds like with other conditions? I don't know how long it took for you to get where you are now but I would guess it was a miserable frustrating journey like most. Then to find that nobody is competent/knowledgeable enough to treat you!

Good luck. I really hope they can get you on the right meds, and soon!

You've put me off my breakfast now

Debx

[firewatcher]

Have you spoken with your Pharmacist? He can't prescribe, but he can call the doctor's office and request a refill and tell the nurse that this is not a medication that you can stop cold-turkey. One medical professional to another usually carries more weight than the patient calling, asking for drugs. Your family doc can also prescribe it for you and give you a taper schedule. My family doc did that for me and Klonopin before I went to Vanderbilt for testing. Just a thought.

Ooops! responded to wrong post!

Edited March 4, 2010 by firewatcher

[bjt22]

I understand. Two of my doctors I really like. Both have HORRIBLE staffs that make me rather have teeth pulled than to deal with them. They have both messed up prescriptions horribly...in fact, when I need to call for a refill, I pretty much leave myself a couple of weeks in order to correct the messes that are made.

I also share the "not being taken seriously enough". I've had what I call the "it ***** to be you" appointment where I'm told that basically, it's not worth trying much else. I can intellectually understand this, but it's undermined when I hear from other patients seeing this doctor who report having every stop pulled out. Why them and not me? It's difficult not to take this as some form of judgment on the worthiness of my recovery. The NP was surprisingly better last year than the doctor...at least she picked up on a condition that I've been relating for several years now and ordered the appropriate tests...however, after having them done, I never heard back from any of them and had to read the results in my records at my primary care doctor's office. So, by and large, I treat myself these days. My primary doctor helps. When I see the cardiologist or NP this year for my annual appointment, however, my husband is going with me and is going to help me try to get further. If we don't, he's insisting that I see someone else even though this doctor is considered the "best of the best". Not the "best" if one is not receiving any actual help, I suppose. It is disheartening as I'm almost afraid to try another doctor at this point...if the "best" is so seemingly unwilling to go out on a limb for one, what can one expect elsewhere?

[MightyMouse]

I use fax b/c it leaves a permanent paper trail and it seems to get me a better response.

[Notgivinup]

I understand. Two of my doctors I really like. Both have HORRIBLE staffs that make me rather have teeth pulled than to deal with them. They have both messed up prescriptions horribly...in fact, when I need to call for a refill, I pretty much leave myself a couple of weeks in order to correct the messes that are made.

I also share the "not being taken seriously enough". I've had what I call the "it ***** to be you" appointment where I'm told that basically, it's not worth trying much else. I can intellectually understand this, but it's undermined when I hear from other patients seeing this doctor who report having every stop pulled out. Why them and not me? It's difficult not to take this as some form of judgment on the worthiness of my recovery. The NP was surprisingly better last year than the doctor...at least she picked up on a condition that I've been relating for several years now and ordered the appropriate tests...however, after having them done, I never heard back from any of them and had to read the results in my records at my primary care doctor's office. So, by and large, I treat myself these days. My primary doctor helps. When I see the cardiologist or NP this year for my annual appointment, however, my husband is going with me and is going to help me try to get further. If we don't, he's insisting that I see someone else even though this doctor is considered the "best of the best". Not the "best" if one is not receiving any actual help, I suppose. It is disheartening as I'm almost afraid to try another doctor at this point...if the "best" is so seemingly unwilling to go out on a limb for one, what can one expect elsewhere?

Yes, yes, thank you. It's just like you said. I've heard of people being given special vitamin food, cerefolin I think it's called, clonidine, and all sorts of other things have been suggested to them, and I can't understand why not me? Why not at least something else to try.

I was only doing as he asked. I called back just like he said, and nothing?

I ask myself, do I not seem sick enough to them? What have I done. I'm NOT asking for anything for free. I've made two trips out there. 3 hour drive there 3 hour wait to see him, and a 3 hour drive home. TWICE. This after waiting almost a year to see them. Even if he did not want to do anything over the phone, I could understand that. How about asking me to make another appt.? I would of. I told the nurse I may not be fainting everyday, but my quality of life is terrible.

IDK. I probably have a big red X on my chart now, lol. Maybe it's like you said. They feel there isn't anything else they can do for me.

But yea, one of "the best". Too scared to go anywhere else that's for sure.

Thanks everyone for your responses, I truly took them all to heart. The faxing is a great idea. That is if I can make myself have enough strength to go find a fax machine.

[lieze]

I think sometimes if doctors get too busy this kind of stuff can happen.

Since he is so good wouldn't it be great if he would expand his practice and train some other doctors under him so that they can provide quality care to more people, maybe less wait time to get in and see him. His practice has to be booming if you have to wait that long to see him.

No offense to nurse practitioners or physician's assistants but with something as serious as POTS I would prefer to see a physician.

lieze

[Maxine]

Reading all of this makes me sick! It is the responsibility of who ever is in charge to make sure there is adequate staff to provide the patient with the best possible care. (I don't think this is necessarily the doctor if they work in a hospital office) a lot of doctors try to find help--(other doctors), but I have had one actually tell me, "there's no money in it", so doctors don't want to specializer in this area. As far as I'm concerned there is no longer any excuse on lack of knowlede on POTs and ANS dysfunction! It's TIME----time for the Docs, and other medical staff "get it".

It's really not rocket science, but it is a frustrating science. ANS dysfunction can lead to a cascade of other secondary health problems, or other health problems can lead to secondary ANS problems. They don't necessarily have to specialize it ANS dysfunction, but it would be nice. If they are just respectful, return your calls, and try to work with you, things could be peaceful for everyone.

I edited out some of my post, as I think this is better suited from PM or e-mail.

Maxine :0)

[lieze]

I am an LPN and I don't feel comfortable with anything I just read about the conduct of the staff in the above story.

I have also had difficulty when I have called and tried to communicate with doctor's office nurses regarding residents in our nursing home. I have been treated with less than desirable diplomacy.

Maybe they get too disconnected from their patients because of the distance of contact? There really is no excuse.

I would not be comfortable having a nurse practitioner diagnose me or prescribe anything at this point but that is just me. I would prefer to see a doctor.

lieze

[Maxine]

Lieze,

I sent you a PM, as I never know who is reading my posts here.

Maxine :0)

[bkweavers]

Notgivinup,

I've had the same results with this doctor except it's my daughter he's treating and not me. We went to him because he's suppossed to be the best around. We were told by one of his nurses that he would make her much better. That has not happened. The communication has been terrible. I call and it's maybe a week later when someone gets back to me. The last time I called to see what medication would be tried next, I never got a call back! We are now taking her to a doctor only a hour away instead of a 7 hours trip. Maybe we will go back to this other doctor, maybe not. He really hasn't done anything for us. The only reason my daughter is doing better is because of us and her physical therapist. I've spent countless hours on the internet talking to other parents and adults with POTS and have learned much more from all of you than I ever learned from a POTS doctor! I didn't expect this doctor to perform a miracle on my daughter because I know he's only human, but I expected much more than what we got.

I guess I've lost quite a bit of faith and respect for doctors in the past 3 years. Even the good ones seem to lose themselves along the way. Or maybe they need to communicate to their staff what should be expected. It sure seems like communication between the doctor and nurses and office staff has broken down in this particular office.

Brenda

[Notgivinup]

Teachr4k, sorry this happened to your daughter too. And a 7 hr. drive! I just don't know what to think anymore. I'm giving it a rest.

Maybe he's too overwhelmed. I didn't expect a miracle either, but when the nurse told me to stay on the same meds, it was almost funny because with the exception of singulair.............. I PUT MYSELF ON THOSE MEDS. I figured out the combo and put it all together.

So what did he do for me? Tried one medication, and quit.

I hope and pray you find the right doctor for your daughter. I'm sure you will.