Vanderbilt Update

[acesew]

I did the autonomic tests and saw the dr today.  She doesn't think that at this time I have dyso.  My tests did not show enough variance.  She is thinking that I have complex migraines plus not sleeping well that is causing my trouble.  She said there is the slight chance I still have dyso, but it isn't registering now.  I really don't know what to think about all of this.  I feel so bad and if it is headaches, why hasn't anyone picked up on it.  I don't know.  I was hoping I was going to get some definite answers today.  I am not feeling well today, probably because of all the tests they did.  Hope all of you are feeling okay. Talk to y'all later.

[acesew]

I have had several EEG, all showing normal.  that's the thing with me.....everything is saying I am normal, but I don't feel normal.

[halbashes]

I think I remember you mentioning having seen a Neurologist at one time in a previous post.  I was wondering, have you had an EEG to check for seizure activity?

[cathyst]

Thank you for your responses.  My case is SO complex, I hope they can help.  They are welcome to keep me for as long as they need!

As far as headaches, my MS specialist at the University of Miami also specializes in Migraines.  Hopefully, you are near a city, with great hospitals and access to great doctors.    This is all so difficult when dealing with something that is so rare.

As Tiny Tim would say "God Bless Us Everyone" (or was it One and All).  Of course his other saying of "Tiptoe Through the Tulips", for us oldies!

[acesew]

My appt was with Dr. Cherdak.  She was very nice.  I am following through with the headache thing.  I do monitor my BP and HR at home.  The funny thing is I fainted Thursday while riding to TN.  I took my readings: BP--114/44  HR---115.  But nothing happened with the testing.
I figure the headaches are most likely causing alot of problems (I keep a headache), I just don't know if it is everything.  We shall see.
Cathyst, I would check periodically with cancellations.... Sometimes they will have one, but you may not be able to get away.  I don't know.  Everyone I saw seemed to be very nice.  So good luck.

[Heiferly]

Dr. Raj is highly published, so at least that much is good news!

I'm so sorry to hear about the long wait.  If you didn't have to travel so far, I'd suggest you call intermittently to ask if they have any cancellations, but I imagine it'd be a huge hassle for you to make spur-of-the-moment travel arrangements.  If you think it might be worth a shot, cancellations are the only way I can think of to get a sooner appointment.  

[Heiferly]

Obviously, not being a doctor and not knowing you at all, I can't offer any expertise as to how accurate the diagnosis you were given was.  It may be that as the doctor said, there's still a chance that it's a form of dysauto and it didn't get picked up by the tests for whatever reason ... as others suggested, maybe you were having a particularly good day, etc.  These things definitely DO happen and if I were you I would keep that in mind.

Another thing I would consider, though, is looking thoroughly into what the doctor suggested.  Complex migraines can be very serious and disabling in some cases, and I think there's a natural tendency for most people (even a lot of doctors) to look at things as "just headaches" but there are migraines so severe that people have to be hospitalized.  Migraines can be really serious and can really interfere with people's lives, so I hope you don't feel as though the doctor was saying that your symptoms aren't serious or "real."  

It may be tricky to find a really good specialist to address complex migraines; you may want to ask the doctor you saw at Vanderbilt if they have any suggestions of neurologists that would be good for you to see for this problem.  Not all neuros have expertise in this area.  If it were me, I would definitely want to look into it; at the very least you could see a specialist and have it ruled in or out.

In the meantime, are you tracking your HR and BP at home to see if it's roughly consistent with the results they got on the testing at Vanderbilt?

[cathyst]

I just rec'd my appt. confirmation from Vanderbilt.  UGH - SEVEN MONTH wait!!!!   I have been dx'd, so I really don't know what they can do for me.  It is just that there are NO autonomic dysfunction neurologists in the area, or state for that matter (Florida).  Since my neuro. dx'ed me back in the spring, I still haven't had the opportunity to ask my laundry list of questions to a qualified doctor.   I think I am seeing a Dr. Raj, but I can be wrong.

My symptoms are very advanced and the progression never stops.  Afraid to see how I will be seven months from now.

Sorry - just venting!

Cathy

[acesew]

I am the same way. But today my Hr and BP did what it is normailly suppose to do.  Blows my mind......

[CHRISTYDRAKE]

When my son had his TTT, he was borderline.  But he was having a very good day the day of the testing.  I moniter his BP and HR daily from lying down to standing up.  Somedays his heart rate only goes up slightly as little as 5, then there are days it goes up 60 beats.  It generally ranges in the middle of there, but it varies from day to day.

What puzzles me is, sometimes when his heart rate goes up 50 beats, he could still be having a good day.  While on some days when his heart rate only goes up 5 or 10, he could be having a bad day symptom wise.  I don't quite get it.
Christy