It all started when I was about 10, I passed out in school and my mother took me to the pediatrician who told her "it was my hormones" and she should just make sure I had breakfast in the morning...
After that, I started passing out maybe once a month for a year or so, then less frequently, eventually there were times when several months passed without an incident and times when I passed out repeatedly every day. Then they figured out my sugar was low, it wasn't "sometimes it drops" so much as "its constantly under the normal level" and I only passed out when it went even lower. They ran every test they could think of and eventually said "she'll be fine after 18, it 'must' be her hormones" aka: we have no idea and can't look anymore.
My family that happens to have a hospital at their disposal scheduled monthly tests to be ran on me, hoping they would eventually find what was wrong, this degenerated into getting tested for anything and everything every few months.
Today I'll be 23 in a couple of months, my "passing out" has somehow managed to fizzle my brain in such a way that sometimes I wont remember 15 minutes, other times 15 years. Sometimes I "wake up" from having fainted and I wont be able to see, or hear, or move my legs, or understand language. Sometimes I wont even faint and my memory will be lost, or I will "spaz out" and when "brought back" I wont know anything that went on during the "spazzing".
The only thing doctors here have been able to figure out this far is that some substances make me faint or have a personality change or lose memory. Basically they've been running a sort of "trial and error" marathon each time I go visit them, just so they can "safely" use me as a guinea pig. At this point, my organs (pancreas, liver, spleen) have deteriorated to the point I will soon need a transplant, my bones are somehow splintering (particularly my femurs) and they think I'm having an "early onset" of Alzheimer's..
So far, they are clear on the fact that all of this is being caused by the hypoglycemia, what they have no idea about is what's causing the hypoglycemia itself.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
I haven't been diagnosed with anything!
- By Volk
- Posted August 10, 2009 at 5:55 pm · 6 replies
- In Getting a diagnosis
- Shared with the public
Explore topics in this discussion:
Adrenal hormones Addison's disease Memory Dysautonomia Cortisol
6 replies
- Oldest first
- Newest first
- By SickOfBeingSick
- Posted August 11, 2009 at 4:21 am
- Report post
Have they tested your cortisol levels? Thoroughly, like a 24-hour urine test instead of an isolated blood draw? Have they done an ACTH stimulation test?
I have Addison's Disease (adrenal failure) and it can cause exactly the symptoms you are describing, including low blood sugar, cognitive problems, fainting, problems moving and problems understanding language and speaking. Nothing in the body works correctly without sufficient adrenal hormones.
If something is attacking your internal organs, as you described, your adrenals could be failing, too, causing every one of the symptoms you have described here.
Just a thought.
Cathy
- By caringcounterparts
- Posted August 11, 2009 at 4:41 am
- Report post
I'm sorry to hear you've been so sick for so long without a diagnosis! I would definitely suggest contact Dr. Pejman Cohan at UCLA in Los Angeles. He is one of the nation's leading endocrinologists, and is very kind. He is able to provide consultation over the phone.
If you want to see a doctor within your area, I would recommend finding a neuroendocrinologist at a teaching hospital.
For more information about hormonal disorders, including Addison's, the Pituitary Network Association (www.pituitary.org) has lots of info, or contact Sharmyn McGraw (www.sharmynmcgraw.com).
Wishing you wellness...
Ellen
www.bulletpointblog.com
- By Jessica597
- Posted August 11, 2009 at 8:48 am
- Report post
I am so sorry to hear of your illness. I have never heard of anything like that before, and i'm sorry that I don't have any information to offer you. I hope that something changes for you soon and that someone figures it out.
I wish you well, and take care.
- By fltraveler
- Posted August 11, 2009 at 6:12 pm
- Report post
have you been tested for pots...my daughter has dysautonomia with postural orthostatic tachycardia syndrome..u can also have ncs....easy to test...blood pressure and heart rate when standing for 1min. then 2..then 3..up to 5min ...if pots... blood pressure will stay about the same but heart rate will increase by at least 30bpm....if ncs...blood pressure drops...tilt table test can confirm this...not many drs good at treating so let me know and i can refer you to a few good ones..also go on dinet.com for more info or potsplace
- By Kathie1
- Posted August 12, 2009 at 10:42 am
- Report post
I only needed to read the first few lines on your note. Please go to dynakids.org and to DINET.org. My son who is now almost 16 has been ill for several years now.. Dr. Blair Grubb is world-renowned physician who treats those with POTS. (it is a form of dysautonomia. If you are interested I can call you or you can email me @ Kathie.Schwarz @ att.net I would be happy to go over more info with you and help you if you do think you have POTS. Blessings to you dear one. My heart goes out to you as I do understand what it is like to have no answers and to have others look at you like you are a fruit cake! Keep in touch, please. Kathie
- By Leslie56
- Posted November 3, 2009 at 10:05 am
- Report post
I know this is months since you first posted your message, but I wanted to reply because I thought
my situation sounds alot like yours. I was 11 when
I first started fainting and i am now 56. I went to every
doctor known to mankind and they would all say your
blood pressure is low and you will live a long life. In the
meantime I suffered. Anything stressful (having children) made the symptoms much worse. About
four years ago I finally got my answer. I have POTS.
There are a host of other symptoms that can go along
with the low blood pressure and I know others have
directed you to Dinet.com, but that is the site where
I really learned all about my condition as most doctors
still don't know too much about it unless you live in
a big metropolitan area where there are specialists
in that field of Dysautonomia. I found one in Chicago
and am going to see her soon. My primary care doctor
is caring, but doesn't know much about Pots. I really
hope you get some answers to your problems. Take
care. Leslie56
Add to the discussion