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Mystery Illness

Hello, and I thank you in advance for your response.  I am writing on behalf of my girlfriend, who has been struggling for months with an illness, and all doctors/specialists in the area whom she has seen have appeared unwilling to delve further to find the cause.

Some history: she is 28 years old.  At age 18, she developed repeated syncope, and was diagnosed with chronically low blood pressure.  At this time, she was prescribed florinef, which she has taken to this day.  In the 10 years since, she has had some flare-ups of the syncope, but they subsided quickly.

In September of 2008, she passed out at work and was taken to the ER.  She was given fluids and was sent on her way, with the syncope being chalked up to an isolated incident.  Since that point (it is now late January 2009), she has had episodes of syncope and has gone to the ER no less than 8 times.  Each time, she is told that there is nothing wrong with her and she is sent home.

In the time that has elapsed since the initial incident in September and now, she has been "up and down" health wise, but mainly down now for the past 6 of 7 weeks.  During this time, her primary care doctors has disagnosed her with mononucleosis (epstein-barr).  Her syncope is also accompanied by severe back pain on her lower right side, which has persisted throughout this time.  During one of her ER vists, she was sent to surgery to remove a very small calcification from her ureter.  I was told by the urologist after the procedure that the stone was almost certainly not the cause of her pain.  Sure enough, a couple weeks after her release, the pain returned.

She has also been diagnosed with ovarian cysts during this time.  Her pain seems to get worse when she's having her period and during ovaluation, and lessens during times in between (but it's still there).  Her last two periods have been irregular (what she describes as "clumpy"), and prior to her last period, she had some pretty significant breast enlargement and acne which was worse than her usual acne that occurs prior to her period.  She is not pregnant according to the ER doctor she saw 5 days ago.  That same doctor told her that an ultrasound performed during that visit actually showed her cysts were improving and that there were no signs of fluid or twisting of the ovaries.

She has been to a GI who performed a test that involving injecting her with fluid and requiring to lay flat for 2 hours.  We have been told that test showed no problems.

He OBGYN says that her cysts must be monitored, but that they were not causing her back pain.

A follow-up with her urologist revealed nothing of concern.  He, contrary to the opinion of the OBGYN, suggested that her back pain was indeed being caused by her ovarian cysts.

Her cardiologist says that her heart looks very healthy, and he contiues to state that she is very healthy overall, and as soon as she fids out what is triggering her syncope, her life will return to normal.

Two days ago, she went to an endocrinologist to have a test performed where blood was taken at various intervals over a one-hour period.  We are currently awaiting those results.  In the interim, she has been given a meter to check her blood sugar periodically.  Measurments have been as high as the upper 90's and as low as the mid-60's.

Two weeks ago, she seemingly "snapped out of it," feeling 100% and able to go about every day activities.  This, interestingly enough, coincided with a vanishing of her back pain.  However, just when she thought this ordeal may be over, she had an episode of syncope on the exact same day that her pain returned.

Perhaps the biggest problem for her is that she feels extremely tired on a daily basis.  She has not been to work consistently for two months, which in turn causes her great stress that she will loe her job.  It has also been a taxing on her as she feels that she is effecting the lives of myself and her parents, who have been looking after her constantly for months.

As of today, her back pain is described as an "8 out of 10", and she feels absolutely drained and "foggy" in her head; she is unable to think and function clearly.  Her blood sugar was a 96 after a glass of orange juice this morning.  Her cardiologist has started her on midodrine in addition to the fluorinef in a attempt to keep her on her feet until the underlying cause of her syncope is discovered.  In the 6 days since she started taking the midodrine, she has managed to stay upright.  She continues, however, to have the severe back pain and complete fatigue that is not at all cured by a full night's rest.

Any advice or input would be greatly appreciated.  Could this be an endocrine issue?  Addison's Disease?  Hypothyroid?  Could this all be triggered by the pain of the ovarian cysts (her "good week" described above was the week right after her period, which was a very painful week for her).  Any advice would be great.  I have resorted to this after feeling as if every doctor in this area has simply "passed her off" without venturing to discover the underlying problem.
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144586 tn?1284669764
First of all, I question why florinef was prescribed.  Florinef has lots of nasty side effects. Before going to florinef, was a simple salt supplement followed by extra efforts at hydration and electrolytes suggested?

This condition is commonly caused by systemic vasodilation. The vasodilation is usually moderated by sensors in the left and right carotids. Some people have very sensitive carotids (Jackie Kennedy, for example) and cannot even wear turtleneck sweaters.

The muscles contract by a calcium-channel mechanism. I would have tried a calcium supplement also before going to florinef.

You are on midodrine?

I am going to suggest you find a physician with a naturopathic orientation.

You have a constellation of problems not easily adressed in this kind of forum.

Purchase a pulse oximeter as soon as possible and check your P02 daily.

Fatigue can be causes by insufficient oxygenation or low blood sugar.

Your sugar levels are kind of low. This suggests an insulin utilization issue.

You don't need to measure blood sugars. The figure by itself is meaningless. You need either a glucose fasting test or an insulin clamp protocol.
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