Friday, June 20, 2014

An Interesting Week

I didn't get a whole lot done since getting my load of mulch on Monday.  Too stressed out and exhausted.

Hubby and I went on a fact finding mission in Miami on Wednesday.  We went to see Neurologist #3 at University of Miami Hospital.

Hubby has a rare sweating disorder that continues to stump neurologists.  The first neurologist referred him to Mayo.  BC/BS denied coverage and said we had to get a second opinion.  Second opinion neurologist ran a bunch of autoimmune tests and MRI's but came up empty so he too referred us to Mayo for "autonomic nerve testing". BC/BS denied it again, but we got referred to University of Miami Hospital for a consultation.

The symptoms:

May 2011 left side of head stopped sweating and dry cough started
July 2011 left arm stopped sweating
Oct 2012 right side of head stopped sweating
Dry cough is now chronic

At this point we have been expecting his right arm to stop sweating, since this was the pattern with the left side.  But thankfully that hasn't happened yet.

June 2013 - Sleep apnea and low oxygen level - placed on CPAP with oxygen
July 2013 lower legs started swelling regularly
Altered taste

We've been doggedly trying to determine if all these symptoms are related, what exactly this rare disorder is, and more importantly, can anything be done to correct it. So far, they've only been able to treat the symptoms as they occur.

The Neurologist at the University of Miami Hospital was very kind, and did give us a name for the wierd sweating disorder - Idiopathic Acquired Regional Hypoanhidrosis - and confirmed Horner's Syndrome which had previously been diagnosed.  He ordered the autonomic nerve testing to take place in July but he warned us that it probably won't do more than confirm the diagnosis.

The long worded diagnosis simply means: unexplained, wasn't born with it, affects more than one area, lack of sweat.

Of course we knew all that.  But we did learn a few things which eased our minds.  Most importantly that because he sweats profusely where he does still sweat, his body is compensating well for the non sweating areas.  He doesn't flush or have hot flash type moments, so the doctor believes he isn't at high risk for heat stroke, so long as he stays hydrated.

We'll follow through with the autonomic nerve testing in July.  Who knows, they might find out the cause of some of the other symptoms in the process.  

We also confirmed that big cities are scary and we drove home as fast as possible!

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