doctor's don't understand...

[Mom2four85]

I thouth I found a great cardiologist who understood Dysautonomia and even referred me to Vanderbilt so I can have more testing since it wasn't his expertise.  Boy was I wrong, when push came to shove and I gave him my RFC form and restrictions/limitations about everything I'm going through his response was - I can't sign this - there is no reason with these conditions why you shouldn't be able to work or be medically "disabled"

How do I get a doctor to understand? My first cardio didnt but her NP did; but I can't go back due to insurance issues.

My bp went from low 70/40 &  90/60 and last visit was 165/110 and my VT and arrhthmia's are out of control yet he says it's to be expected with me...I don't understand how he thinks this doesn't put me out during the day...that's on top of the new things in 2011 with my spine messed up completely now.  Sometimes I lose my feeling & function of different parts of my body which has been worsening daily - yesterday the pains in my arms was unbearable.

I'm just so frustrated that I have to start over again; I'm running out of options and going to Vanderbilt is going to be impossible now I've spent my savings on medical tests & care in 2011 already and had to quit working even PT 5-10 hrs a week to pay for my health ins.

sorry to sound so whiny and complain but what is it with dr's who just don't understand...

[Mom2four85]

Thanks Stephanie; that's why I question my dx also - I've had VT since I was 9; dx with polymorphic VT and my TTT just isn't consistent with NCS I don't think. Maybe I'm just not understanding NCS/OI and PoTS.

I've questioned my TTT since I had it done and because my EP is a very well known respected dr the other dr's just agree with him but I don't understand why.

Indications: Profound Bradycardia; recurring syncope
BP 126/79 HR 77  - Start (60 degrees)
BP 129/87 HR 101 - 20 min
BP 137/71 HR 109  Nitroglycerin given
By minute #4, the patient had a syncopal event with no palpable pulse
BP 97/48 HR 78 - supine state
Conclusion: These findings are consistent with classic NCS with mixed cardioinhibitory and vasodepressor responses.

Can you still have a dx of NCS or OI  when they're in range during the 20 minutes but you faint only after nitro is given? I've questioned whether nitro is the problem and with my arrhythmia's if it actually caused something similar to long QT and that's why I fainted.  I know I have syncopal episodes with no provocation - passed out just about any and everywhere since age 9, but if that's not what's wrong with me I want to find out what is.

Hopefully the university will be some help, I just can't afford to go to Vanderbilt or Mayo :( too many expenses involved and no way I'm leaving my kids for a week with my husband.

[vbc2000]

Hi Lisa,
I hope the teaching hospital can help you.  It's a shame things are so hard for us when we feel so bad to begin with.  Who has the energy to run down all these docs and search and search and educate them?  It's so hard.

The EP saw that it was POTS right there in B&W on the tilt table test results!  My heart rate went up and my bp went down.  The awful thing about the misdiagnosis was one Cardio did it at the hospital and diagnosed it as NCS, but then the Cardio who was my old Cardio, didn't catch the mistake!  It's pretty scary.  Let us know how things are going.
Stephanie

[Mom2four85]

sorry you're going through this also and having problems...I think I may have been mis-dx also but it's really tough to even find a local doctor who understands or who is willing to listen to me as a patient and learn something.

I'm hoping by going to the university here they may know a bit more since they're a teaching hospital.  I may have to find a way to pay the EP I had originally when my insurance messed up payments just for him to re-evaluate me.

how did they figure out it was POTS and NCS? that's interesting

[vbc2000]

Hi There,
I haven't been around here lately because I've been struggling so much but I had to write.  I too am going thru/went thru what you are running into with docs.  I thought the Cardio who diagnosed me with NCS with a tilt table test understood, but when midodrine raised my bp to around 110/70 he pretty much said "you shouldn't still be having these symptoms" and strongly implied it was my depression!  I was bowled over.  I thought I wouldn't have to deal with that because I had been diagnosed with something.

It took a while to pick myself up from that but I decided to get a second opinion from my boss's doctor who luckily turned out to be an Electrophysiologist who knew what Autonomic Dysfunction.  Turns out I have POTS not NCS and the old doc misdiagnosed me even though it was right there in black and white.  The new doc knows about POTS and validated my experience which was great, but admitted it's not his specialty.  I was going to go down to NYU but have been hearing negative things about them.  Since it's not covered and I don't want to waste my money, I don't think I'm going to waste my time.

Luckily the Electrophysiologist was ale to fill out the paperwork I needed for work.  I don't want to lose my job but I have been needing to take alot of days off.  The form he filled out explains that I have a long-term chronic illness and that will ensure they can't discriminate against me and fire me.  

I just wanted to encourage you a little and tell you I think it just boils down to finding the right doctor and I know how discouraging and impossible that is sometimes.  We need to take a breather every once and a while but after that I think we just need to keep pressing on.  I know how hard it is, but you can do it.  Hang in there...you'll find the right doc.
Stephanie  

[Mom2four85]

I forgot something, I'm afraid with my bp going from a steady 70/40 - 90/60 daily from age 9 -44; then the past few months it being 150/110 - 165/115 that my cardiologist does not care - it's worrying me that I may develop heart disease or a stroke etc when it stays this high w/o midodrine - headaches and severe tachycardia with shortness of breath even w/o exertion.

[Mom2four85]

sorry to hear that kluesy; I know it's difficult but doctor's who don't understand should at least try and understand their patients.

I have documented symptoms from the day I got my dx from my local EP and cardiologist - a simple TTT showed my problems even their records to the new cardio with them outlining my symptoms & their suggestions doesn't make it any better

this can be a very debilitating disease and I don't know how someone can say it's not if they don't live in our body daily and go what we're going through

[kluesy]

I too spent a great deal of money going to Vanderbilt.  Got a H-POTS diagnosis with suggestions for treatment.  My local cardiologist tried Aldomet and propranolol both of which made me worse.

It seems everyone has just stopped trying.  I am so frustrated, too.

I don't think the doctors understand how life changing this illness is.

Sorry, don't have more suggestions, I just understand your frustration.