finding a specialist

[unity79]

My 53 year old sister, who has a known seizure disorder, has had two bouts of very low BP, rapid weak pulse, fainting, after riding a bus for 1-1 1/2 hours.  She has shown steady deterioration for about 5 years - bowel and bladder incontinence, memory. Her hands are always cold.  Has seen several docs and no one seems to be able to help her.  I wonder if she is suffering from some sort of autonomic disorder.  Which specialty of medicine usually deals with this disorder?  Just wondering where to turn next.

[LivingInHope]

G2 has less sugar than gatorade, and I think there may be even be better than G2 out there!  Has she tried sublingual B 12 for her memory?

[unity79]

No formal salt supplementation.  We were told to just let her salt her food and to not limit salty foods.  After reading some of the posts here and other info on the disorder, we have substituted her diet sodas with gatorade, altho she is resistant.  

[LivingInHope]

You're welcome!  Is your sister getting salt supplementation since her sodium is low?

[unity79]

Thank you living in hope.  I'm sure hoping we won't have to travel far from home to get help, but will keep your suggestions in mind.

[unity79]

Thank you.  We have been following with a fairly young neurologist, who seems to be unable to think outside of the "epilepsy" box.  The family doc did today make a referral for the tilt table test.  My sis does lead a rather sedentary lifestyle, and has low sodium from her seizure med. Her neuro status is deteriorating, so it seems like everything may be catching up with her. I have some medical knowledge, but hadn't heard of this autonomic disorder.  Isn't the internet wonderful? I just hope we can get some answers so we can help my sister, or at least keep her safe. Again, thanks for all of the info.

[LivingInHope]

You might want to see if she could get a referral and invest in travelling to a place that specializes in Autonomic Dysfunction testing, such as Mayo Clinic in Minnesota or Vanderbilt University in Tennessee.

[Kellysbg]

The autonomic specialists tend to be in either cardiology or neurology.  I might suggest going to your local cardiologist and telling them you want to "rule out Neurocardiogenic syncope.". Although this is technically an outdated term (now called Neurally Mediated Syncope) most cardiologists have heard of this more common form of autonomic disorder.  They should order a tilt table test (TTT) which is considered the gold standard of diagnosis for most autonomic disorders as Orthostatic intolerance is the hallmark symptom.  Then, if the symptoms seem to be more nuero related, follow with a neurologist - preferably young and recently trained at a major medical center where they have likely heard of this condition.