Go To A New Dr Or Wait?

[silvrwood]

After suffering most of my life with palpitations, exercise intolerance and chest pains, I went to a cardiologist at the age of 19 and found I had regurgitative Mitral Valve Prolapse. For the next 15 years, it stayed about the same.

In addition, I've always had joint pains, random pains in various areas of my body, intermittent severe neck pain - and starting at the age of 14, intermittent weakness in my arms and/or hands. When that first happened to me, my entire left arm went dead numb for a day. At the age of 17 I began to find myself chronically fatigued.

My physical condition, from all the markers the doctors look at, is great. I'm 35, 122 pounds, 5'7", vegetarian, phenomanally low cholesterol, blood pressure and heart rate, don't smoke, only occassionally drink. I jog 20 minutes 3 times a week and try to do strength training 2 days a week. My iron and sugar levels are great.

But this year things took a change. I started getting dizzy and disoriented a lot. My hands felt weak a lot. At work, the office manager insisted on driving me home at one point because she was afraid to let me drive. I went to the doctor for the first time in about 4 years with a list of concerns: constant fatigue; intermittent weakness; dizziness; neck, back, hip and random pains; headaches; shaking; memory issues; palpitations... She sent me to get X-rays of my neck and hip, and blood work for thyroid and autoimmune disorders. The X-rays showed my hip was normal and my neck only has mild reversal of the something or other (I looked it up and it means it's starting to straighten.) My blood work was good, with only the alkaline phosphatase being out of range.

So I went on to the cardiologist, whom I am supposed to see once a year. He, in turn had me go for an MRI of the brain, because my sister has chiari malformation, and because of the dizziness and my issues with smelling things. It showed a tiny spot of something unknown, and was considered normal.

My ECHO showed the mitral valve prolapse and heavy thickening of the valve, along with thickening of another valve and trace leakage in that other valve. All normal according to the cardiologist, and no reason for me to have problems. So his response was that no one really understands why we people with mitral valve prolapse are so sensitive to normal conditions that other people experience without issue, but that there were forums where we could get support from each other.

While I found that invalidating, I checked out the sites and found, according to the Mitral Valve Prolapse Center (specifically for people with mitral valve prolapse - http://www.mvprolapse.com/dysautonomia.html) that there are people with MVP who don't feel a thing, but that those who do have symptoms have dysautonomia as the cause. I ended up looking up dysautonomia and found that all the problems I had been complaining about were listed as symptoms: light headedness, generalized weakness, tremulousness; palpitations; fatigue; exercise intolerance (I have to exercise first thing in the morning, and I have to push myself hard to make it for those 20 minutes, with breaks every 5 minutes); feeling cold all the time; cognitive impairment; aching neck and shoulders; low back pain; chemical sensitivities; irregular moon cycles (even after having 2 children)... all of these things were explained in one word. All the times people have said judgementally that I should be able to do something, accusing me of being a wimp or worse - I felt like I had vindication for why I am so drained and have to push so hard to accomplish what I do, and why I still fall short of what others can do. I felt like, when my sons' friend's mom says, "Why can't you mow your 1/4 acre yard yourself?" I could say, "Well, I have dysautonomia, and it makes me tired," instead of trying to excuse myself with, "It's just more than I can do, what with the kids and work and keeping up the house and running errands and being a single mom," and getting that sallow, disapproving, accusatory look. It explained why, when I had given blood when I was 125 pounds, I had nearly blacked out after it was done, and they had to keep me for 45 minutes.

Then I got sick. And things went from bad to worse. I started feeling like I was having heart attacks - where my chest would feel like it was filling with liquid, then washing down my torso and making me nauseus. I felt like my heart was barely keeping pace, and I was shaking so badly. So I went back to my cardiologist with printouts and my research and asked him about it. At first he cut me off, but when I handed him the print outs, he said he'd never heard of an association between dysautonomia and MVP.

He had given me bistolic for the palpitations previously, but I felt like my heart had stopped and I was going to die. So I told him I wasn't taking that anymore. He insisted it was the right thing for me to take, and I said no. So he said he could test me for the dysautonomia, or just prescribe the medication. At first I thought of yet another doctor appointment and co-pay, more time off work.. and went for the prescription.

I started feeling better about then, so I didn't take the medication figuring that I wouldn't know if it was working if I wasn't feeling bad in the first place to see a difference. But I started thinking that I should have a diagnosis one way or the other so other physicians would know how to handle my needs, and so I would, and any other part of my life could make the necessary accomodations. So I went back and asked for the tilt table test. I had read that they tilt you for up to an hour and monitor your blood pressure and heart rate. The cardiologist again insisted I should take the bistolic, and I again refused saying I felt like my heart had stopped. He ordered the test.

What I hadn't read, and what he didn't tell me, was that they might hook me up to an IV and pump isopropyl in me.

Well, I could see the heart rate, but not the blood pressure. I saw my heart rate between 60 & 70 bpm while lying down, and I saw it go up to 90 bpm when I was elevated. Not the 30 bpm that is a definite diagnosis. I don't know what my blood pressure was because that machine was behind me.

The doctor kept the situation that way for about 20 minutes, then started 1 cc of isopropyl. I immediately began to feel bad and was clenching my teeth, but I wasn't feeling dizzy. The doctor kept the drip going, and my heart hit 190 bpm, and I went in to convulsions. The doctor asked me if I could hold out for 30 seconds more, and I, convulsing violently, shuddered, "Yeah."

He finally stopped the test, and after several minutes I stopped convulsing and crying. I asked him what the test told him, and he said it told him that I had Mitral Valve Prolapse, with tendancies to dysautonomia. He again told me I should take bistolic, and I again told him I felt like it had stopped my heart and would not take it. The nurse later told me that I should get a second opinion and that the worst was that I'd have to take the test again, but I NEVER want to go through that test again. Not with the isopropyl.

So, I asked for my medical records. And what the doctor wrote was that my heart rate and blood pressure remained stable, and that at the end I had started shaking. Those are both inaccurate. The logs of the stats aren't present in the medical records, and I intend to insist on getting those.

So now I don't know what I should do. I know I'm not going back to that cardiologist. I think I would be a prescription fatality if I listened to him. But do I bother with the time off work, co-pays and hassle of first going to my primary care to ask for a second referral, then to another doctor for the consultation, then another test...? Or, as long as I'm feeling OK and suffering no more than the usual fatigue, just deal with it? Or, should I accept his diagnosis that I don't have dysautonomia, despite what my research shows me?

(Please forgive spelling mistakes and typos - I haven't enabled the IEspell on this site yet.)

Thanks for any advice or input you have to offer.

[firewatcher]

What does your general practice doc say? He can refer you to an autonomic center. My first cardiologist also said everything was "normal" during my stress echo, but within 3 minutes of walking my HR had topped 180 bpm. GET EVERYTHING!!! including your MRI on a CD or films. Organize yourself and go to someone who knows how to treat you. It may be a hassle that saves your life. Welcome to our crazy world! I hope you find some healing.

[MightyMouse]

It's important to find a doctor that you trust. Additionally, you may want to work with a doctor who'll put you on a monitoring system so that they can see what the meds are doing to your heart rate when you're not in their office. Getting another opinion, with our without more testing, could be quite valuable, especially if your doctor seems to be inflexible with regard to trying to work with you to find meds that are a good match for you. Personally, I'd dump any doctor who keeps trying to give me the same medicine that doesn't work over and over.

Nina

[juliegee]

I'm with Nina on this one. New doctor time. Finding one who gets dysautonomia is tough. Maybe check the physician recommendations on the DINET site.

When my son had his TTT at Johns Hopkins, we got a printout of the entire test. We saw a chart of his BP and HR every few minutes. You should get the same thing.

In your post, you seem to indicate that a POTS DX is based on more than 30 bpm HR rise from supine to standing. Actually, that's it. That's the diagnostic criteria. If your last TTT demonstrated that, you have a POTS DX whether your doc acknowledged it or not. They usually like to keep you standing for a full 45 minutes to see if your BP will bottom out. If nothing happens by THAT time, then the meds are injected. Your experience sounds frightful. There's NO reason you should go through that again. A poor man's TTT can usually show POTS too & you can do it in the comfort of your own home.

Welcome & sorry for all you've been through. How frustrating to have been through a horrendous TTT and not have a DX.

Hang around. There's lots of knowledgable folks here. They've helped me a lot.

Hugs-

Julie

[Guest tearose]

You have great advise already, I believe the same...new doctor time.

Hang in there, it is a bumpy ride at first. You will learn and find your way.

welcome!

tearose

[flop]

Hi,

I agree that it sounds like time to see a different doctor. If you do need to have a repeat TTT just ask that it is without any medication (I don't know why some US doctors use isoprenaline - in the UK if any med is given it would be GTN spray to lower BP).

Good luck,

Flop

[silvrwood]

Thanks so much!

Should I ask my primary care for a referral to another cardiologist, or to an autonomic specialist?

Why do you suppose a doctor would refuse to acknowledge medical facts as presented by other experts, or the stats of his own tests?

[MightyMouse]

If there is a doctor specializing in autonomic issues nearby, then that's what I'd go for personally. Just because someone is a cardiologist doesn't mean they necessarily "get" how to dx and treat our group of disorders. There are plenty of cardiologists willing to learn, so if there is not a specialist in autonomic problems nearby, I'd look for a cardio willing to learn with you about dx and treatment and be open to adjusting your treatment based upon how YOU are responding to treatment(s).

Just my 2?

Nina

[Guest tearose]

To answer your question..."why would a doctor refuse to look at medical facts?..."

I suppose, that doctor thinks they know better?

I too really believe you will benefit a thousand times over with a REAL specialist, trained in the Autonomic Nervous System.

Just a crude generalization...many non-ANS trained cardiologists will wrongly assume your problem is all in your heart. & many non-ANS trained neurologists will wrongly assume your problem is all in your head. Actually, it is often a blend of both and sometimes additional issues as well. You need a ANS-Literate, trained specialist so you will finally have confidence that you have an accurate diagnosis and then hopefully an appropriate, personally tailored treatment plan.

[silvrwood]

Thanks! I am going to look for an autonomic specialist, then. Hopefully one in Ventura County, but I'll go to LA if I have to.

[poppetkazutaka]

On both of my TTT there were no injections needed. So you should be okay. :3 You can ask for them not to I'm sure. But I would definately get all the records. Also, if they refuse, call the police. Those are your records and they have to hand them over, even if you have to legally force them to do so. :3

Good luck~! :3

[silvrwood]

I guess none of the providers know the turn around time required by law to send medical records, or they think we don't and figure they, therefore, do not need to act quickly. I started by requesting that medical record noting the statistics from the hospital where the test was performed, and they are well past their 15 days - even counting time for mail to deliver. Time to pester everybody some more. Gosh, I hate that.

Anyway, I have an appointment with my primary care Wednesday to ask for a referral to an autonomic specialist. She is an internal medicine physician, and as such falls in to some list I found searching for local physicians specializing in autononomic disorders. I don't know that the two really go hand in hand, though?

So, what pointers can you give me to help me get the referral/care I need? And does anyone actually get better with any of the care of meds out there, or do you just trade symptoms? Does anyone else have palpitations, shortness of breath, shaking, chest pain, exhaustion, and joint pain as their primary symptoms (according to the MVP center, MVP with symptoms is typically caused by dysautonomia - http://www.mvprolapse.com/dysautonomia.html)?

[janiedelite]

Does anyone else have palpitations, shortness of breath, shaking, chest pain, exhaustion, and joint pain as their primary symptoms

I'd stick with any of the physicians on the www.dinet.org physician's list (link is on the left). I know there are several listed in California. Lucky you! There are none listed for my state, Oregon. I flew to Mayo in Minnesota where I did NOT have any meds injected during my TTT. I also received a list of my HR and BP every few minutes during the test.

I have all the above symptoms, although my joint pain might also be muscle pain. I'd have to add nausea, other GI issues, and burning skin to the list.

You can also do a "poor man's tilt" prior to seeing your PCP on Wednesday. You'd have to spend $40 or so and buy an automated BP cuff. Take your BP and pulse while resting lying down for a while. Then stand (try to stand absolutely straight and not fidget) and take it every couple of minutes. If your pulse increases 30 points, systolic BP drops by 20 points, or diastolic drops by 10 points, it could indicate dysautonomia. For more validity, you could take it for a few days in a row at the same time of the day. Side note: my BP increases on standing which is just how my type of POTS manifests.

[jump]

I had a similar experience, in that I had a TTT with significant results (my hr went from 60 to 140, and then they stopped the test because they said my hr was getting too high), but when I asked for my medical records all it said was "TTT - normal, negative for syncope."

When I went to see a specialist, I explained what happened in the TTT in detail, and noted that they didn't record any of that on my medical file. I also explained that I didn't want to have the TTT again because of financial reasons (it cost me $700 the first time!). The specialist understood completely - he was able to diagnose me based on my own records (I recorded my hr sitting and standing for about a week) and based on a different test I had had previously. In other words, he was wiling to "take my word for it" and did not require me to have another TTT.

I think you should see someone who specializes in dysautonomia, and just explain everything as you have to us. Chances are, he or she will have had other patients with a similar situation - a cardiologist who misdiagnoses, mis-prescribes, and/or gives incomplete medical info - and he'll be very understanding.