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Reply | Forward Message #136 of 593 |
Re: New member

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
Left lobe thyroidectomy
gall bladder
sinus polyps non ca
prolapsed colon
vasectomy
ganglion cyst

DIAGNOSIS
Polyendocrine Deficiency Syndrome
type 2 - (APECED)

Hypothyroid
Diabetes
Hypogonadism
Enlarged Prostate gland
Restless leg syndrome
HIGH Cholesterol
High Triglycerides
Unusual and undiagnosed spots on skin.
Loss of protein from Kidneys
ADD
GERD
Chronic fatigue
Depression
Bilateral carpal tunnel syndrome
memory problems
Confusion / difficulty thinking
DJD Diffuse desiccation spinal column
Scoliosis
C3 - C4 herniated disc
T8 - T9 Central disc herniated
T9 - T10 disc herniated


MEDICATIONS
Effexor XR 300 mg
Welbutrin XL 300 mg
Adderall 20 mg
Provigil 200 mg
Synthroid 0.88 mg
Flomax 0.8 mg
Mirapex 0.25 mg
Protonix 40 mg
Actos 15 mg
Altace 2.5 mg
Crestor 20 mg
Testosterone inj. 200 mg biweekly

So you can take any symptoms from any of the problems and I could
have them. With me I have a few that are always there and then a
lot that come and go. I never know how I will feel tomorrow.
So trying to plan anything has become moot. Just plan it and how
ever I feel I just have to deal with it.
The diabetes has me up 2 or 3 times a night for the bathroom. I
never get a good nights rest, which adds greatly to the fatigue.
I have Hot flashes and PROFUSE night sweats! Soak the bed, blankets
and pillow!
Basically you just feel like you have the life sucked out of your
body.
My medications make the numbers look right but they don't make me
feel right.

This developed over the years as intermittant problems. But never
any in combination bad enough to hold me back.
This is such a dramatic change from just 5 years ago. I am a
Journeyman Boilermaker / welder by trade. I was one of the high
steel men that would climb and walk the I-beams building power
plants etc. I could easily lift and carry 100 lbs up stairs.

Now I am a shadow of what I used to be.
I become Short of breath from walking at a normal pace under 100
yards. Usually have to stop before I can go on, or walk much
slower.

I have come to accept this as the way my life will be, and that was
the hardest thing about this syndrome.




Mon Jun 4, 2007 9:25 pm

navyhm1983
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Forward
Message #136 of 593 |
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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
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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
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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
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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
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Apr 1, 2008
11:34 am
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