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Friday, July 28, 2017

Pieces of the puzzle

my medical profile has continued to be a ever more complex situation over the past few years, yet we don't know why.

Here's what we know:

The initial reaction: A massive virus that started Friday June 13th 2014 and left me hospitalized around five or six times in a six month period, and close to 10 over the course of a whole year. Infectious disease could not pinpoint what started it, and the virus, and virus type, remains unknown to this day.

Symptoms: Bilateral vocal cord paralysis (severe) to the extent of barely moving has been mostly resolved with scarring and trauma left behind , bilateral vocal cord dysfunction still has significant impact, stridor that when sick or agitated can become severe happening day and night for several days, but not to the extent of a few years ago, no sense of taste or smell for unknown reasons likely nerve damage, VPI and cleft pallete unknown reasons and start. Bilateral hearing impairment with left ear being worse (gets worse over time), craniofacial nerve damage of various degrees, unique vocal tic related to stridor.

Treatments: hearing aides and FM set, possible CIs when hearing gets worse enough, Guanfacine for vocal tic, CPAP trial for VPI with slight improvement.

We have many pieces of the puzzle yet no idea on how to put them all together, or even what kind of disorder or disease this is. The picture this puzzle makes will certainly be interesting when we find out, if we ever do.

Can you think of any disorders that have these kind of symptoms?

Until next time,
Max

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