The MELAS Update

Exactly one year ago today, give or take a few hours, was the last time I was admitted to the emergency room.  I must say that it was against my inclinations and against what I wanted to do.  Who, after all, wants to go to the hospital?  Why would I want go just because I couldn’t move or couldn’t eat without great effort?  Why would I want to go just because I would sit at the top of the stairs, unable to walk downstairs, without great effort?

Maybe I would have gone to the hospital with less persuading if I knew that I’d lost a good deal of blood.  Maybe I wouldn’t – it still took a lot, after hearing that for the first time from some RN or medical assistant, to convince myself that it was in my interest to spend more days in the hospital last summer (following at least twelve other non-consecutive days in the prior two months in various hospitals).

I had indeed lost a great deal of blood.  Without going to look at my records, which I have no interest at looking at, I would hazard a guess that I had about a quarter, or third – at best – of the amount of blood I should have.

What caused me to lose so much blood?  Let me quote myself as I first wrote here about MELAS* last year:

As I said, what happened was a stroke.  It took an ER trip and an ambulance ride to San Francisco to tell me that what happened to me seemed random and the solution (if I can call it that ) was baby aspirin, which is a blood thinner.  My stroke was not a vascular stroke, so baby aspirin may not be the answer.  (In fact, use of aspirin and aleve (and perhaps Tylenol – things we all use at some point – may have caused my 10 day hospitalization for an ulcer).  (emphasis added).

Bleeding ulcers are not the thing to do.  There was, among other things, a three hour ambulance ride when I was at my worst and every bounce on the road would sent a jolt through my pool stomach which has nothing in it and no blood left.

I referred last year to the possibility that Aleve or Tylenol may be to blame.  I do not think that to be the case; nor, in blaming baby aspirin do I wish to dissuade you from using it yourself unless you have damaged cells in your brain from a recent stroke.  I think, rather, that a doctor erred (massive understatement) in prescribing baby aspirin because she did not know what else to do.  Knowing that baby aspirin helps with vascular strokes – blood clots, the kind people are familiar with – and not knowing what else to do this bad doctor did the wrong thing.

Let us move on to how I have been doing.  As I said, a year ago was the last time I was admitted in the ER.  Since then I have seen the local doctor who has become my primary physician (a  term I never before understood) several times, and have gone to a number of specialists in mitochondrial disorders.  I’ve seen a doctor at the children’s hospital who can’t see my regularly because I’m not a child, but can give me advice and help in emergencies.  He has given me advice written by the expert specialist who I saw a month later.  Repeatedly I have received pretty much the same advice.  I’ve seen, as I said, the expert of experts, but he gave me little advice I hadn’t heard before because everyone else had been giving advice based on his research anyway.  I have been taking the same supplements with a small change (generally an increase) in dosage for a little more than a year (read, since after the first stroke).

I have felt well for the last year.  I think I came down with one common cold, which would not worth speaking of except that I have heard from doctors that colds and especially the flu can be rather devastating to a body with MELAS.  I’ve been increasingly well and can ride a bike and golf.  That’s a massive improvement from not being able to walk.

After much convincing I have, I feel, backtracked, from law school and am now taking paralegal classes.  I want it to be, even with my research abilities which have returned, a stepping-stone to get me back to law school.

I have great hesitance to admit that I have medical problems, or that I have had strokes.  Among others, a relative who is a nurse advised me not to publicize that I had a stroke for reasons of employment.  However, having once written that I have had a stroke and am not perfect physically, it has been written.  It has been written here and publicized, and it has been written on private messages which I do not expect to be private.  It was with hesitancy and with honesty that I wrote those messages and I owe my friends great apology for not being more forthright.  Many people have asked me how I am; some of them knew that past and some did not, sometimes I would elaborate and sometimes I would not.

*MELAS stands for mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes