My appointment with the neurologist from RUSH went way
better than I could have ever asked for!!!!!!!!!!!! He asked so many questions
about how I was feeling, what medical issues I have had, what tests have been
done, basically everything and anything about me EVER!!!! He realized how
serious this has been for me and was genuinely interested to look at the big
picture and help me with not only the dysautonomia, but also with EVERYTHING
else. He was surprised that there were a number of tests that had not been run.
He speculated on some conditions that I may have, but wanted to run a bunch
more tests to check on some things.
At this visit he did diagnose me with a connective tissue
disorder called Ehlers-Danlos Syndrome (EDS). EDS is a hereditary disease. In
people with EDS a protein called collagen that is essential to the strength of
skin, joints, and muscles is not synthesized correctly. This makes these body
parts more elastic and causes skin to stretch easily and bruise frequently and
badly. Also joints are prone to dislocation, hyperextension, subluxation, and
spraining. There is no treatment for this condition besides management and
treatment of injuries. So far this has not caused me tremendous problems
although my joints do pop frequently. My hips and my left elbow and left knee
are the biggest issues for me right now. My right hip frequently gets “stuck”
and I have to pop it back into it’s joint, my left elbow also gets “stuck” and
I have to snap it back into place, and my left knee bends backwards. All of
these are extremely painful, but in the grand scheme of things are not nearly
as bad as other issues I have.
He ordered a brain MRI to be done since mine was way
outdated and a thoracic spine MRI as well since I had never had one. On top of
these scans he ordered autonomic dysfunction to figure out exactly what was
going on with my heart rate and blood pressure. He talked about many other
tests as well, but he wanted to start with these.
Both of the MRI’s came back completely normal, which was
fantastic news! Then on July 5th I went for the dysautonomia
testing. This was not a fun day… First they hooked me up to electrodes to test
how much I sweat. After this I had to do a couple of deep breathing exercises while
monitoring my heart rate and blood pressure. The last test of the day was to do
what is called a tilt table test (TTT). During the TTT I was strapped to a
table and a base blood pressure and heart rate were established lying down.
Then they tilt you upwards into a standing position. I failed this test
MISERABLY!!! We expected I would fail, but not this badly. I lasted less than
two minutes before they had to lower the table so I did not faint. My blood
pressure dropped dramatically (down to 47/20) and my heart rate went up to 135
bbm. If we would have went even 20 seconds longer i would have passed out. This meant that I absolutely have dysautonomia, but we still do not know
why I have this condition. To help find this out he ran multiple blood tests
which were sent to Mayo clinic and some were ran at RUSH. I have not gotten
these blood tests back yet.
He's still conflicted on how to treat this condition. He
wanted me to start the fludrocortisone again. I conveyed my concerns, but he
felt like this was still the best route to go. We agreed to start out on a much
lower dose than I had been on previously. Last time I had tried this medication
I was on 0.1 mg twice a day for 5 days and then once a day after that. This
time around I started only taking it twice a week for one week and then three
times a week for the next two weeks. That is where I currently am at and so far
I have not been feeling great, but nowhere near as badly as I felt last time!
We will just wait and see. I check back in with the doctor via email on July 29th
and we will reassess then.
My next appointment with Dr. Barboi is the 15th
of August. We will see what he wants to do next at that time. He is hoping that
if we get my dysautonomia under control that my other symptoms will get better
as well.
I will try to update this blog regularly now that I am up to
date! This will be the place to get updates on me. I have fallen way behind on
emailing you all and I apologize!
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