New to the group--question about frequency of episodes, etc
- Hello to you all, Oct. 18, 2005
I am new to this group, but my wife and I are very thankful for
another similar health group Yahoo website (for medullary thyroid
carcinoma, part of MEN2A), so I was glad to see that you all had a
group on Yahoo also!
My wife (and her mom) and our two young daughters all have a type of
cancer called multiple endocrine neoplasia type 2A (MEN 2A). My
daughters unfortunatley inherited it--they were diagnosed at age 3
and 5 and had multiple surgeries down at Stanford in 2003; now
they're age 5 and 7, but doing good for the moment. Making a very
tough long story short, because of our "medical maladies" we have
become so very very educated on endocrine malfunctions that
sometimes we feel we should shift into doing research (I'm sure many
of you can relate to that)! But, we also know that we are so very
blessed, and that dealing with this has made us realize that we need
to live life fully each and every day and learn to love the little
things that life has to offer. We know that God has blessed us with
being able to deal with such maladies in this modern age of
medicine, and we are full of faith that by grace we live each day.
We live in a very medically remote area of far northern California
(near Ferndale, south of Eureka, about 275 miles north of San
Francisco)--often referred to as "behind the Redwood Curtain".
Unfortunately, the nearest endocrinologist is five or six hours
drive south of here in the Bay Area, so it makes things tough for
Here I thought we were an "endocrine-challenged family" with my wife
and two daughters (and my wife's mother here with us also has
MEN2A), and lo and behold, I've started having major signs of
Diabetes Insipidus during the past year or so, and very much so
recently with increased frequency. Guess I didn't want to be left
out! No diagnosis yet, but since we're so remote from any good
medical expertise, I'm having to do a good bit of groundwork and
I've got a few "beginners" questions that perhaps some of you might
eventually have time to respond to for me.
1) I don't ever see reference to whether or not DI symptoms strike
with episodic type frequency, or if they are always continual for
folks with DI, or if they can be all over the board in terms of
duration and intensity. In other words, do you just continually
have polyuria and polydipsia once you have DI, or do some of you
have definite episodes of it? I seem to have episodes that last
anywhere from 6-24 or 48 hrs, and lately they've been more and more
frequent. For me, it is just like flipping a switch from relatively
normal to full-blown cruddy. My bloodwork for kidney function so
far has seemed pretty normal, so it seems that we might should focus
on the pituitary/hypothalmus possibility.
2) In addition to the polyuria and polydipsia, do any of you also
have additional symptoms that accompany an "episode"? I tend to get
a raise in heart rate (usually up to about 90 to 110 bpm; a raise in
b.p. (up to about 160/100 lately; otherwise it's pretty normal);
sometimes mild fever (100 to 101); and usually queasy and definitely
extreme fatigure. I don't really read about these other types of
symptoms accompanying DI too much.
3) Do any of you have any DI medical experts that you'd recommend in
northern California, if any of you are in the general area?
Alternatively, do any of you know DI medical experts that would be
willing to talk to my local MD's that just don't have the expertise,
since we're so isolated? I know they're all usually so "busy" that
they don't make time for that sort of thing, but it doesn't hurt to
OK, that's a long enough beginner's email. More to come later, I'm
sure. Thanks to any of you that might have the time to respond--and
Back in the beginning of my diabetes insipidus fun, I certainly had days where it was worse. There was even one odd stretch for a week where it simply no longer existed. I can tell, as the foaming in my mouth, etc., tells me when I need my DI meds. As for the other symptoms, I think those sound a lot like dehydration symptoms. If you have di, you could easily be dehydrated some of the time. I think it would be WAY worth the time to get yourself to a specialist and see if you can decrease some of your symptoms.
- Hello to you Max,It's awful, but it sounds like doing a "trial" of DDAVP might be worth seeing how it impacts your symptoms. It's nonharmful if you do not have DI, and it MUCH less painful (and less expensive than the water dep test).By the way, have you had any head trauma, concussions, etc. recently? My son is the person in our family who has DI, and that was the first question they asked him at diagnosis. Of course, they did a brain MRI to eliminate all the scary things. Of course, he was 2 at that time and falling down and running into things all the time! We have no idea what has caused his DI and he has been classified "idiopathic" (I'm tired and probably misspelled that).I'm so sorry your wife, mother in law and daughters have had such medical battles. These things are hard. May they be blessed richly in other ways.I hope you find your answers to your DI questions. As far as the "coming and going" - I don't really remember with my son. It does seem like in the beginning it was building up so to speak. But, of course I didn't want to believe there was anything wrong my child, so I probably ignored it at the beginning stages. When it got to the point that it wasn't possible to do that was when it was very steady and very frightening to me -- and measurable daily --- the empirical data of the measured number of ounces he drank per day (80+ for a 30 pound child), weight loss (% of body weight in # of days), the specific points of dehydration (sunken eye sockets), his inabilty to maintain energy levels - lying around lethargic, following me around lying on the floor all day, etc. I created graphs and charted this data and turned it into his endocrinologist and he would analyze it and contrast it, etc., along with his continual blood work. After he started his DDAVP I continued to graph, and his numbers changed drastically, he became a normal little boy again he's three now, weighs 36 pounds, runs, plays, eats, etc. Before I kept measurable date I was not getting anywhere with my GP. But, when I started showing him NUMBERS, he realized that there really was something going on here. Mother's intuition wasn't getting me anywhere, which made me mad, because I KNEW something was really wrong with my child. BUt, that's neither here nor there. ANd, he's so much better, and I'm grateful.And, that's probably MUCH more than you wanted to know! Maybe there's a little grain of info that will help somehow!Great good luck to you!Jodi