Too many different diagnoses

[marshallgurl]

Well, I will start by saying that 3 years ago, I started having chest pains and syncope.  Was diagnosed with Postural Orthostatic Tachycardia Syndrome and ARVD in Nov 04.  Last year, I was diagnosed with Supraventricular Tachycardia and Arrythmia/Disrythmia.  I recently spent 3 days in the hospital after the ER doc said I was having a Heart Attack, after this stay, I came home with diagnosis of Cardiomyopathy, Paroxysmal Tachycardia, and Ischemia.  The only problems I am really having is the fact that I get all these different diagnoses but nothing seems to change.  I am still on the same heart medication I have been on for 2 years, just a higher dose.  Does anyone here have any of the same problems I have and if so, how do you feel and how do you deal with them.  I need all the advice I can get.

[marshallgurl]

Thanks for the comment.  I am actually a member of the DINET website, have been for a few years now.  My cardio gave me their website when I was diagnosed so that I could do my own research.  My symptoms now are being tired, lightheaded, kinda dizzy but no room spinning, my heart beats are very heavy/pronounced, steps are horrible and prolonged standing or walking makes me feel like i'm going to fall over.  I haven't fainted from my POTS, but I do blackout, but I usually stay upright.  Who did you see to diagnose you?  What kind of doctor?  My main frustration is seeing docs that don't know anything about POTS or how to deal with it, and because of this, I get misdiagnosed a lot.  I hope that you get better long-term treatment than I have had.  I was diagnosed almost 3 years ago and haven't had 2 doctors agree on anything.  

[liamn56]

I also have POTS, I don't faint my blood pressure just drops and my HR increases from 55 laying psition to 85-95. Anything I do increases my HR. Walking-up the stairs will get me 110-115 beats/min. what are your symptoms. Just got it about 6 months ago. This site has great info.http://www.dinet.org/

[Momto3]

I can only imagine your frustration.  You are entitled to clear answers regarding your condition! I think it would be a good idea to request copies of your medical records, especially those records relevant to your cardiac workups, tests, etc.

I understand your dilemma regarding insurance, but is there any chance the VA would cover a referral to Cleveland Clinic?? Given your laundry list of diagnoses, a referral might not be out of the question. Are you in close proximity to Cleveland?

What medications are you currently taking?  Does your current cardio feel comfortable with your medical regime?

Please keep us posted. Best wishes to you.
connie

[myowncrazybeat]

I am also a veteran. While there may be many really good military medical practitioners out there (my OB was one), there are just as many that I feel are a little below standard.  Probably because lots of commands are "training hospitals or clinics" and the practitioners just have to learn/gain experience.  I personally didn't like being a cardiac training patient.

I was finally able to see an "outside" cardiologist.  Working with him has been such a blessing.  Whatever the diagnosis, even if it's the same, I already feel better... I have confidence in him.  He didn't say to me, oh you're a woman... it's stress or homones.  I was treated just like anyone else might be and it was refreshing.

You must fight for yourself.  You deserve to have a quality, accurate diagnosis.  While in the military hospital for two separate stays, I probably had at least 8 different people evaluate me, military and civilians.  People kept coming in and talking with me.  I ended up with 8 different opinions on what to do.  That alone was stressful and certainly didn't help matters.

That said, for your peace of mind, I would do whatever is required to get an outside opinion.  Under Tricare, you are authorized a second opinion. Not sure how this would apply if you are treated by the VA.  Sometimes, having someone you have faith in to tie up all your loose ends is worth any price.  Our minds are quite powerful.  I will certainly say a prayer in you.  I believe that is "good medicine" too.  :)

By the way, I doooooooo love the military!!!!!  It was one of my greatest achievements in life.  I am proud to be a vet!!!!  Hope I didn't offend anyone.

[marshallgurl]

First off I want to thank everyone that replied.  It is nice to know that there are others out there as frustrated as I am.

Momto3 - I'm not too far from Cleveland, I am in southern WV but am extremely willing to travel, especially there.  I know several people who have gone to the Cleveland Clinic and recieved outstanding care.  I am planning on asking my doctor for a referral, to just about anywhere, as long as I can see someone else.  I am however going to give the new doc a chance to see if he knows anything about any of the disorders I have.  This guy is new and my appointment next month will be the first time I have ever met with him.  I have copies of all of my medical records, from every place ever treated.  It was suggested to me early in my enlistment that it is smart to keep copies of everything, in case you need a second opinion or if they somehow mysteriously get lost.  

myowncrazybeat - Wow do I know what it was like being a guniea pig for all these "doctors-in-training".  Some were actually competent, but most seemed to have no clue and since I am so young or they just didn't want to take on my case, I was deemed crazy and sent to mental health.  I like the VA doctors, I don't think that most of them are any different than an outside doctor, but I want one who doesn't look at my age or gender and then categorize me with all other 26 y/o females and decide that there is nothing wrong.  I think I would even be happy to just have someone sit down and explain to me what everything on my EKG's mean.  I have a few websites bookmarked that have examples of EKG's and a few of the problems that are commonly seen and their explanations, so that helps.  But I would feel better if someone told me what each thing meant.  

Again, thanks to you all for responding.  It means a lot to have so much good advice, much better than I am getting where I live.

Everyone take care,
Sarah

[myowncrazybeat]

Sorry, it's me again.  Personal history that might help you feel less alone... I have had several episodes of paroxysmal a-fib, pvc's, pac's, tachycardia and one documented episode of "5 beat wide complex tachycardia".  On one of my ER ekg's, it also said "consider ischemia" and "st and t wave abnormalities".  

At my first military cardio appt, the civilian contractor said "are you sure you were in a-fib?".  He hadn't even reviewed my chart.  I had to remind him to look at the ekg report from the ER.  He recieved an officer comission shortly after.  Go figure.  

He and I just didn't get off on the right foot, though others thought him to be "quite brilliant".  He was knowledgeable.  Honostly, you must have faith in your provider.  I finially got to see the "outside" cardio, and I do have that faith in him.  His bedside manner was excellent.  I guess it's just a personal thing for me.  

Also, if you can get the second opinion from the "outside", you have to request copies of inpatient records separate from your outpatient records.  If they are archived, it might take a while to get them.  Be persistent... and trust in the Lord.  :)  

[marshallgurl]

It is extremely frustrating, but the biggest disappointment in all of this is that I can't go to an outside facility.  I am a Veteran and since I have no insurance, I have to be seen at a VA approved facility, or otherwise pay out of pocket.  I see the new Cardiologist in April and I am asking for a referral to a specialist, because I am tired of being tired and feeling bad all the time.

[anacyde]

I'd gather all of your medical records over the course of this mess and head to a center like Cleveland or Mayo.  That's got to be frustrating and you definitely don't seem to have as much info as you should as a patient.