Feeling Stranded By Doctors

[Canadiangirl73]

Hello all,

Since I last posted seeking advice on whether to choose a PET scan over an angiogram, I saw my cardiologist and my GP. Both appointments were utterly disappointing, leaving me sad, frustrated and wondering what I should do next. If anyone knows where and to whom I should turn based on the following, please share!!!!

So back in April, I had an echo. Perfectly normal. Stress echo in June: unremarkable aside from reduced stroke volume after exercise and quick raise in HR. Cardiac MRI in early July: mild global hypokinesis of left ventricle (meaning muscle not as energetic as normal) but normal EF. Failed attempt at doing CT angiogram in August because of lack of understanding of autonomic dysfunction (http://forums.dinet.org/index.php?/topic/24069-urgent-need-of-advice-before-apt-thurs-pet-scan-or-angiogram/?hl=%2Bpet+%2Bscan).

When I saw my cardiologist, he had nothing really to offer me. He was stumped by the MRI findings and said I might be developing a cardiomyopathy from my heart beating so fast all the time. Thing is, my heart doesn't beat fast all the time, only when I stand. He should have known that based on the recent Holter results which showed a HR of 50 sitting and 117 standing. Plus, I do not recall reading anything that suggests POTS sufferers develop a cardiomyopathy from their condition because, like me, their heart doesn't beat fast all the time. Does anyone know of the contrary? To add insult to injury, he did not take any steps to investigate any further this suspected cardiomyopathy. He said he would put me on another event recorder in December and then decide whether he does an angiogram when I see him next in January. We need to rule out whether or not I have a blockage.

Fast forward to today when I met with my GP. Well, she concurred with the cardiologist on the latter issue, refused to refer me to see other specialists (immunologists, another cardiologist, another internal medicine doctor), and told me to "accept that I will probably never know the cause of my autonomic dysfunction and all other tests would be pointless". I am so angry I could scream!!!! I saw the top-notch autonomic specialist in Hamilton, Canada, July of last year, and he too was clueless as to what to do with me, since my autonomic onset and presentation were unique.

What should I do? Any thoughts? I will go the 23&me route and see where it leads me, but aside from that, I don't know what else I can do. I feel stranded.

C

[Guest Alex]

Canadiangirl,

how about including a neurologist in the picture? They may be able to see things from a different perspective. Like one of the drs I've seen told me - you've seen the "plumber" (aka cardiologist), it's not unreasonable to have an "electrician" (aka neurologist) take a look at things.

While the cause of your POTS may be unknown for now and perhaps harder to find, I would encourage you to persevere. Keep pressuring your GP for referrals. If s/he is not willing, find another dr who's willing to put the referrals in for you - just don't give up!

This is the only article I was able to find that connects POTS and cardiomyopathy - see if it's helpful (that is if you haven't seen it before) and if my understanding of the text is correct, it's the cardiomyopathy that has caused the POTS in the patient rather than the other way around.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2878873/

Stay strong and keep us in the loop.

Hugs,

Alex

[Canadiangirl73]

Thanks Alex for the article. I will read it. Strangely though, I had heart failure that coincided with my dysautonomia onset. I always said if I had not had that very transient heart failure, I probably wouldn't have this today! But when I told docs, I only got a glazed over look, as usual.

[badhbt]

I agree with Alex. I have found my neurologist to be more helpful then my Cardiologist.

Have all of the causes of cardiomyopathy been ruled out? I know that infectious and autoimmune diseases can cause this. The likelihood of coronary artery disease being the cause is pretty low, unless you have a family history? This is probably why they are hesitant to do any further work up. I know how frustrating it is.

You seem very proactive about your illness, don't give up.

[looneymom]

It sounds like you are going to possibly need more referrals. Might need to thing about getting a new gp doctor if she is refusing to do referrals. Continue to be proactive and never give up on finding the cause.

Rachel

[cupcakemomma5]

Try doc.Higginson. I know he's a cardiologist, not neurologist, but he may get you into one. Oh, C. I am really praying something will just click with the doctors.

I am here if you need me.

Hugs

Tara

[Canadiangirl73]

Thank you all for your kind words.

Badhbt: I was screened for Lyme and Chagas and had the usual ANA panel in addition to test to r/o amyloidosis and sarcoidosis. All negative. They suspect a blockage because of my sx presentation and history of elevated cholesterol in the past whilst on the BCP, but are reluctant to take the leap and do an angiogram or PET (so am I, mind you) because they're afraid I will pass (given my history of arrhythmias and dysautonomia). My GP yesterday told me: "Better to have you alive and very symptomatic than dead. If we do nothing, then there's no harm done." Translation: they are scared of a potential lawsuit should something dire happen to me. Meanwhile, I still deal with my sx and this stupid status quo.

Looneymom and cupcake: I am actively looking for a GP who will follow through and put in referrals when they say they will unlike my current GP. I've been waiting for her to refer me to a neurologist for 2 years...

[badhbt]

Wow it sounds like you have really done everything in your power. I can't believe a referral can take 2 years! Something is wrong with that!

Stay strong my POTS sister!