Frustrated

[febefuji]

Low blood pressure and bradycardia are not new to me - I could not control it with meds so, almost 10 years ago I had a pacemaker implanted - that has helped me have enough time most of the time to sit, etc.  I am paced at 95 bpm because I do not have enough blood profusion to my brain - I went to see my EP b/c I had this feeling like the top of my head has fallen asleep.  My doctor - with other symptoms, worsening of gastric emptying, vision, constipation, stomach pain...did a few tests - and with activity my hr nor bp did not increase.  I went back a few weeks later and my symptoms had become more prominent so, he wanted me tested for autonomic failure and anything that could cause it.  I have had the cortisol stim test and a bunch of labs which are remarkably normal.  I have been trying two make appt. with the 2 docs he referred me to but they are not accepting new patients - apparently not even for a consult - I really do not know what to do next - my docs are on vacation for the next few weeks - it seems like I need 12 hours of sleep a night just to be sort of alert.  On top of the current stuff going on - I have read that my pacer prevents some of the more conclusive tests to be done.  I really just want a diagnosis - a way to manage it and then on my way.  Over 10 years of syncope have made me more accepting of my physical limitations and I have been leading an active healthy life - I just turned 40 and feel like there is a lot out there to do.  If anyone has any feedback on how to proceed, I sure would appreciate it.  Thanks

[LivingInHope]

I had a hysterectomy, so my most recent iron deficiency was coming from another source- likely GI bleeding , which they found very little with testing on.  But you likely had occult blood stool testing right?  You probably are aware of Vanderbilt in Nashville TN?  They have some people studying dysautonomia with clinical research.

[febefuji]

I have a GastroEnterologist who has done everything twice since the beginning of the year - most recently within the last couple of weeks.  My thyroid and adrenals are fine - no problems with iron since I had an ablation a couple years ago.  I have seen 2 neuro-opthamoligists as well.  It is worth mentioning that I was overseas in Afghanistan for about a year - cam e home with C-Diff and Geardia and it took about a month to diagnose.  

Unfortunately, I have had many problems that require at least consulting with a specialist - mine like a once-a -year check in.  Cardiolost, EP, Gastroenterologist, Pulmonologist, Allergist, Neurologist, etc.  I am just at a loss for where to go next b/c none of my guys know much about Dysautonomia.

Thanks.

[LivingInHope]

You list a number of GI related issues- did they do occult blood testing, an endoscopy to look at your stomach, a barium swallow, recommend measures to fight the constipation?  Regarding the constipation, did they make sure your thyroid function was not sluggish?  Are they keeping on  top of your ferritin (iron stores) level, to make sure you are have enough iron cso it can be carried for oxygenation of your brain?

Regarding your vision- did they send you to an opthamologist to check it, doing a field of vison?  Did they send you to the neurologist for the sensation on top of your head?