Search the web
Sign In
New User? Sign Up
apeced · APECED SYNDROME
? Already a member? Sign in to Yahoo!

Yahoo! Groups Tips

Did you know...
Want to share photos of your group with the world? Add a group photo to Flickr.

Best of Y! Groups

   Check them out and nominate your group.
Having problems with message search? Fill out this form to ensure your group is one of the first to be migrated to the new message search system.

Messages

  Messages Help
Advanced
New member   Message List  
Reply | Forward Message #135 of 593 |
Re: [apeced] New member

Hey Jerry, sorry to hear of your troubles. It is not easy getting diagnosed. Do you mind me asking what conditions your syndrome consists of? My Brothers have been ill for quite some time and it would be helpful to hear of your story, since it has been difficult for them to get any diagnosis or treatment. Do you have any orthopedic issues for example? Thanks, Dede

Jerry Armstrong <GRAUGEIST@...> wrote:
Hello Group,
I am Jerry and I am 42y/o Man, married 3 children, 2 dogs, and a
partridge in a pare tree. Well, OK, It's actually a Mourning Dove
on
my patio. But it is there.

I know that there are many names for this syndrome and everyone
claims to know about it but no on really does. It's more like they
know of it, but only treat it with supportive drugs.

What I have, my Endocrinologist calls;
Polyglandular Deficiency Syndrome Type II

But like I said it goes by many names.

It also took over 12 years for the Doctors to diagnose! You see,
the family doctors think Men are not supposed to have endocrine
issues. Especially this type, if they even remembered it from
medical school that is.

Here is an example of why it took so very long.
For me "a man having severe night sweats" meant TB not menopause.

Symptoms would come and go and they wouldn't make sense to the
doctors. That was because there were more than just one thing going
on at the same time.

So they started to think I was nutty as a fruit cake.
Well it was driving me there as no one believed me and I was
not making any of it up. It was and is very real.

Finally after 12 years I had gone to an endocrinologist that I
had seen in the very beginning of this all when I had a thyroid
goiter removed. "from Hashimotos disease"

He came into the room and said, "Jerry welcome to menopause."

I started to laugh but he was serious, and that was when
I found out what all was going on...

(You see, my family Doc had convinced me that he could easily manage
my thyroid condition and therefore I didn't need the
Endocrinologist.)
He, later, took me off of my Synthroid even though I felt like I
was hit by a truck. I was told my numbers were close enough that I
didn't need it. "I found out much later other wise."

Now I take 13 pills a day and an injection every other week.

That is the readers digest version of the whole story.

Jerry



Luggage? GPS? Comic books?
Check out fitting gifts for grads at Yahoo! Search.

Mon Jun 4, 2007 11:18 am

dleydorf
Offline Offline
Send Email Send Email

Forward
Message #135 of 593 |
Expand Messages Author Sort by Date

Hello All, I am Gerald Armstrong, I would like to be in this group because of the fact that there are so few of us with this syndrome. I am more than willing...
Jerry Armstrong
navyhm1983
Offline Send Email
Aug 27, 2005
11:52 pm

Hello Group, I am Jerry and I am 42y/o Man, married 3 children, 2 dogs, and a partridge in a pare tree. Well, OK, It's actually a Mourning Dove on my patio....
Jerry Armstrong
navyhm1983
Offline Send Email
Jun 4, 2007
10:53 am

Hey Jerry, sorry to hear of your troubles. It is not easy getting diagnosed. Do you mind me asking what conditions your syndrome consists of? My Brothers have...
Dede Leydorf
dleydorf
Offline Send Email
Jun 4, 2007
11:19 am

Hello, I have a paper that I take with me that has all of my info on it because I can't remember it. This is what I take minus my personal info: SURGERIES ...
Jerry Armstrong
navyhm1983
Offline Send Email
Jun 4, 2007
9:26 pm

Thank you Jerry for sharing your information. I know it must be hard. I really appreciate it. Hopefully it will help my brothers. All the best, Dede Jerry...
Dede Leydorf
dleydorf
Offline Send Email
Jun 5, 2007
4:03 pm

Thank you Jerry for sharing your information. I know it must be hard. I really appreciate it. Hopefully it will help my brothers. All the best, Dede Jerry...
Dede Leydorf
dleydorf
Offline Send Email
Jun 5, 2007
4:04 pm

I wanted to just clarify - I'm pretty sure that APECED is APS type 1 and that APS type 2 is not APECED. They are two different syndromes that contain...
Julia Peterson
juliap99
Offline Send Email
Jun 5, 2007
4:17 pm

I wrote my last reply without adding: Regardless of the wording, the syndromes are similar and this is a great support group for all of them ... Moody friends....
Julia Peterson
juliap99
Offline Send Email
Jun 5, 2007
4:19 pm

My daughter Elisa 6 years old recently got her diagnose APS 1 after years of sickness. No doctor here in Sweden new why she was so sick al the time. It started...
majakvarnstrom
Offline Send Email
Apr 1, 2008
11:34 am
Advanced

Copyright © 2009 Yahoo! Inc. All rights reserved.
Privacy Policy - Terms of Service - Guidelines - Help