Ken's Ordeal #17: No More Tests to Do

In the last post with the tag "Ken's Ordeal" I said that Ken was waiting for a brain MRI and to hear the results of many hours of neurological and psychological tests.  There were delays, but finally the MRI was done and we returned to the VA for the results.  The MRI reveals some abnormalities, but nothing immediately alarming.  There may be frontal lobe damage from many severe episodes of hypoglycemia (low blood sugar), thanks to the pheochromocytoma.  We were told that there is really no way to know. 

We were also told that there are no more diagnostic tests to do.

The psychological tests revealed some deficits in cognitive function, especially for things that required quick responses or multitasking.  Otherwise, his cognitive function is normal, and his IQ is still mostly in the above-average to superior range. 

His psychological profile was not as positive.  He is depressed (of course) and there are other things that I do not want to post about.  Some may be the long-delayed result of much abuse in his childhood. 

The rheumatologist does think that Ken had that droid-sounding disease, RS3PE, but that it was connected to the tumor and he no longer has it.  While his extreme pain remains, there is no more hand swelling.  On the contrary, his hands show a distirbing amount of muscle deterioration.  There is no real explanation forthcoming for the weight loss, continued exhaustion, or any of the other symptoms.  They are recommending he meets with a psychiatrist who specializes in helping people deal with severe, chronic pain.  The hope is to reduce the need for narcotic medications.  If that can happen, his mental function should improve too.

I keep thinking of T.S. Elliot's poem "The Hollow Men."  It is a poem I greatly dislike, especially the final lines.

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.

But this feels like that. An anticlimax. We have been searching for a diagnosis for a long time now.  Ken has been noticeably ill for about three years.  When the rare adrenal tumor, a pheochromocytoma, was diagnosed, we thought that at last we had an answer.  Partially, we did.  Looking back, we know that the pheo was likely present, wreaking havoc, for decades.  After it was removed, along with the adrenal gland it had invaded, many of Ken's symptoms were reduced or gone.  His blood sugars are easily controlled with minimal insulin.  His blood pressure is on the low side.  There are no more "episodes."

I will always think the pheochromocytoma was due to the toxic water situation at Camp Lejeune.  We will never know, of course.

However, many other mysterious symptoms remain.  Two years of tests at many medical facilities, including the Mayo Clinic, have yielded limited answers.

Ken has aged many years in the last three.  He has lost a lot of hair, his shoulders are stooped, he is thin and his muscles are atrophied, he walks unsteadily and slowly, is nearly always exhausted, depressed, and in chronic severe pain. There are some other mental and physical symptoms I do not want to write about. 

Recently I had a conversation with an acquaintance who hadn't seen Ken in some time.  She encountered  him in a local store, and later she told me, "I did not recognize him.  I can't believe the change.  I wasn't sure if I should speak to him and was thinking, 'Can that man be Ken?' -- and then I recognized his hat."

So...we now are faced with answers that are not much of an answer.  And we will need, evidently, to find way to deal with the new normal.

I may not write about this again.  I'm not sure, but Ken asked me to do so, believing there would be answers.  As for now, there seems little point in continuing.

PS  About the pheochromocytoma
Just in case you may read this and find yourself with the same symptoms, Ken really was a classic case.  When, AFTER the tumor was accidentally discovered, I did some research, I saw how Ken had experienced all the typical warning signs.  Pheos are very rare, "one in a million" we were told.  But someone, particularly his endocrinologist, should have known. Symptoms were: unexplained weight loss, uncontrolled blood sugar highs and lows (that had no reasonable explanation), "episodes" of faintness, heart palpitations, and light-headedness.  Also high blood pressure that was not well controlled, even with three medications.  In the last months, episodes of faintness and heart symptoms also included a pounding headache and discomfort that travelled from Ken's feet to his head, or vice versa. On the day he was finally admitted to the hospital he shook so badly he could hardly stand.  It was almost like a seizure.  It would likely have soon been fatal because the flood of adrenaline and other hormones would have caused heart attack and/or stroke.   It may be rare, but if this sounds familiar, make sure someone does a CT kidney scan.