2016 - Diabetes Insipidus is Resolved

By 2016, Ataxia had become my biggest problem, and my other 'problems' faded by comparison.  Since 2011, I had Diabetes Insipidus.  This is a very rare condition, and for years, I used this as my primary clue to find a diagnosis.  In 2011, a neurologist told me that I had a lesion in my hypothalamus in the area where ADH (Anti Diuretic Hormone) is produced.  ADH is produced in the hypothalamus and released by the pituitary in response to your body's sodium level.  The 'normal' range for sodium is 135 to 145.  If your sodium level is high, more ADH is released and tells your kidneys to concentrate your urine so the body retains more water to dilute the excess sodium.  The opposite happens when your sodium if low, your urine becomes very dilute as you try to rid your blood of excess water.  I theorize that this lesion caused the release of too much ADH (SIADH) and this caused my low sodium crisis.  However, within months, I had the opposite problem, too little ADH, or Diabetes Insipidus (DI).  DI causes dehydration, and it causes an unquenchable thirst and very many trips to the bathroom.  Fortunately, there is a medication called Desmopressin which is a synthetic ADH.  This drug is a miracle, and it restored my faith in pharmacology.  If it were not for this medication, I might have been more driven to find a diagnosis and cure.

In 2016, my need for Desmopressin began to lessen, and I first cut the tablets in half, then in four quarters.  Then, I was able to quit.  At the same time, the lesion on my hypotalamus receded away.  This was the first clear connection between my symptoms and multiple small lesions throughout my cerebrum.  I noticed that other symptoms came and went, but for a few years, all of these lesions went away, but, a few have come back in recent years.

With all of my brain MRI's they consistently mention lesions on my cerebellum and brain stem.  I would later learn (through my girlfriend with no medical training) that I had atrophy (shrinkage) of  my cerebellum in 2015 and 2016.  I sure wish a radiologist had mentioned this.  My friend mentioned her suspicion of atrophy to my neurologist (now former), and he confirmed and let me know that over many years, he had not looked at any of my MRIs.  Silly me, I thought that is what neurologists did.

So I took these clues of rare disorders (Diabetes Insipidus and Ataxia), and I searched for a unifying diagnosis.  One doctor thought there was a possibility of two separate things going on in my brain simultaneously.  While I acknowledge this is possible, I thought very unlikely due to the way changes appeared.  Nevertheless, I did start genetic testing to see if that might be the cause of my Ataxia.  No genetic trigger has been found.