I would like to know if a neurologist would be the person for me to consult with. In my family we have an undiagnosed nervous system disorder. I have come to accept that we may not find a diagnosis. What I want is to consult with someone who can put something in writing that would suggest treatments to avoid and those that might be beneficial in an emergency situation. My concern is that if one of us were in an accident,routine treatment could make things much worse.
Our symptoms are a mix of nervous system and cardiac. This is something that myself and two of my daughters have. One of my daughters and I have had EKGs, EEGs, heart ultrasounds, stress tests, Holtor monitors, & King of Hearts. Ours heart do not behave correctly electrically, but the muscle itself is healthy. There was no diagnosis or treatment. We have low blood pressure, paroxysmal tachycardia, and periodic palpitations. None of those are very worrisome.
If our nervous system is seriously overstimulated (doesn't happen often) it seems that it starts shutting down. An example in may case was Novocain with adrenalin. Unfortunately it looks to medical professionals like an anxiety attack. Due to the word limit I can't really give you the information that explains why I know that it is not an anxiety attack and could be much more serious.
My other daughter that has this also has blood pooling and low blood pressure (85/62 is common). It seems like the blood pooling is more of the nervous system starting to opt out. It is at it's worst under exertion--not after.
This probably even sounds to you like anxiety--I really wish I could give more information.
What specialist would be in the best position to help me get something into writing that emergency responders would understand and respect?
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