I Need Help!

[Gracefulprincess]

Hello everyone...it's been a very long time since i've posted anything on here. But i really need alot of help. First, does anyone know of a dr in the Charlotte Nc area who knows about Neurocardiogenic syncope/ POTS...someone like Dr Grubbs? I had been seeing a cardiologist at the Sanger Clinic here in Charlotte. And while i was seeing him my NCS/ POTS was changing...,my heartrate started to get very low. I had Reveal Loop Recorder at the time, and it showed that it dropped down below 50, sometimes into the 30's. The good news is that now it hasn't gone as low as the 30's but still goes down into the low 50's. And when it does that my body feels like its shutting down. So the idea of a pacemaker has been on the table for awhile now. Anyway this dr i was seeing there totally didnt' want to help me, and actually at my last appt with him, he walked out on me while i was crying. So i switched dr's.

I now see 2 cardiologist now. One is an EP, he's the one that has been following me while i had the loop recorder in. And he's very nice but he is very cautious. Even though the Loop Recorder keeps showing that i need a pacemaker or something needs to be done...he has his concerns and is taking his time with making a final decision. I recently decided to have the loop recorder removed because no one is doing anything about what keeps showing up and iv'e had it in for over 3 years. So now he switched one of my heart meds to see if that could be causing my low heartrate problems. Which the new medicine isn't making any difference.

And now that I don't have the loop recorder, i had to go back and see his partner who is a general cardiologist and doesn't know anything about POTS. I saw him this week, and he suggested i don't continue to follow up with him because there's nothing he can do to help me.

That i should go back to the EP..which i'm going to do until i can find someone else.

So to make a long story short, i need to find a dr in my area that can help me. So if you can recommend anyone please let me know. Thanks!

Becca

[Maiysa]

Becca, I wish I could help you. i actually am not aware of your situation but I just wanted to bump you up on the forum so someone can help you possibly. But I got so desperate a few years ago and called one of the hospitals that deals with dysautonomia on the east coast and just talked to a random person and told them I can't find a doc in my area and they just happened to know of a few. A doctor actually had answered the number I called. It was strange and I don't know how it happened that a doc answered the phone. But I also went on the dysautonomia forum...and they have a list of doctors and I just started calling them and telling them my dilemma. I hope you can find someone soon. Good health to you. Don't give up.

[Lemons2lemonade]

Becca this disease can be so dynamic can't it. UGH! I am sorry that things are tough for you right now. I wish i knewof a doctor to send you to, but i am in WA May i ask, what the dr's think caused your lesions,and also what the loop recorder is showing? I haven't heard your story, but have you ever considered seeing dr. raj in Tennessee? You are so close. Plus, i think his background is in cardiology so he might have some extra insight for you.

[Gracefulprincess]

Lemons,

Sorry it's taken me soo long to reply. I've been having issues with signing in..but i think we got the issues worked out cause things are fine now. Anyway to answer your questions....about the brain lesions my neurologist is not sure where they came from or what they are. When they first discovered the first lesion on my right side of my brain, it was right after i had a major car accident. The dr's thoughts at first was that it looked like a MS lesion, but i've already had a previous spinal tap for MS and that was negative. Then when i went to see my neurologist and he saw it, he said that it could be from the concussion. And if it was then the next time we check it with the MRI, it will either be gone or be much smaller. Well later on, not sure how much later it was..we did another MRI. And that showed the orginial lesion which had changed a tiny bit but not much,but also showed a new lesion on the other side of my brain. This one looked much smaller..probably the size of a nickel. The orginal one is longer and about the size of a half dollar coin. I haven't had it checked recently so i don't know if anything has changed. I asked my neuro why there was another one and he didn't have an answer. I guess i'll be getting it checked again soon.

And the Loop Recorder did show my heart rate going down to 35 at one point....then showed it in the 40's for awhile. Then it mostly showed it in the low 50's and high 40's. So my cardiologist said that he had enough info to go on, to prove that i could use a pacemaker. But he has his concerns..one being that i'm young and will probably go through 5 pacemakers in my lifetime, so that means more surgeries. And the other concern is that if i get a pacemaker, it has to be the new MRI compatible one that recently came out because i'll probably have to have more MRI's due to the lesions. And he is fine with pacemaker part of it but would rather choose a different company's leads...but this new pacemaker comes as one unit...so he can't pick and choose like with a regular one.

hope that answers you're questions

And to anyone else reading this has anyone seen the dr at UNC chapel hill?? I looked into seeing the other one listed in Charlotte but from what i read about her and her practice it doesn't sound like she'll be of much help. Does anyone know if there's a dr at Duke??