Don't know what to do now...

[MollieRose]

I'm still new to the AD community. I have been suffering from NCS and have a strong feeling POTS as well. When I last saw my cardiologist he told me that the problems I was having now were not cardiac and he couldn't help me and that I should see neurologist (he suggested maybe I was having seizures). The problem is the neurologist I was seeing before I knew I had a cardiac problem thinks I'm just a crazy psych patient because I was so sure the cardiac problem (SVT which ended in syncope) was seizures that I came across as "not having a medical condition". Now I don't know how to go back to him and explain that I was wrong in trying to figure this out and that I think I'm dealing with POTS (I even had a tilt table done before where my pulse went from around 80 laying down to 164 when I was positioned upright). I'm worried he doesn't believe in it or know anything about it, etc. etc. I don't really have support from my family about it (mom thinks I'm a hypochondriac, didn't want to take me to eye doctor for intermittent binocular double vision for 4 months), and my mom is the only person who can drive me to these appointments (neurologist is 45 mins away). I feel so defeated and I'm tired of feeling so lousy. I'm worried too that even if I can get into the testing I need that insurance won't pay for it (Medicare + Medicaid). Does anyone know if there are ways to get medical transportation that goes out of county? I'm in Maryland if that helps.

[MollieRose]

Thanks guys.

Thanks for the encouragement and understanding. I really appreciate it and hopefully I can get this stuff figured out!


-Mollie

[LA1989]

Hi there--I'm going to PM you because we are not too far from you and we recently saw a neurologist who not only knew what all of this was, he even had a poster about NCS hanging on his wall!
Hang in there.....

[vbc2000]

I don't have alot of advice because I'm in much of the same boat as you except I can drive myself places and my family is trying to understand.  I'm so sorry you're having so much trouble finding help.  Unfortunately it seems to be hard finding help.  You might want to try a new Neurologist if you don't think your old one can help.  I haven't found one yet at all!
Stephanie

[tonyad]

  Hello again :)

   My heart goes out to you! I can feel your hurt and I am so sorry that you are trying to deal w/ all this. if I lived near you....I would drive you :)   Even though I'm not supposed to drive that much either...Lol  ;0

    Just remember that YOU are Your Own Best Advocate my Friend!  These doctors either need to listen and do their job, and that is to help you, or it may be time to move on to another!  

    I am Very, Very sorry that your family is thinking of you as a hypochondriac...it is so emotionally upsetting when your own family will not listen. Please have Faith that you will in fact find the right doctor to listen and to treat you :)  I wish I could help you more.

Take Care
~Tonya