My Intro.

August 22, 2000

Hi .

Welcome to the group! I'm so sorry that you've had such a shit time of

it. Those doctors, I swear!! I'm thinking of becoming a professional

ass-kicker, specializing in stupid doctors!! LOL

I'm sorry that you have a need to be here, but I'm so glad that you

found us!!

BornOfMoonAndSea@... wrote:

> Hi all,

>

> My name is , I am 30, married with no kids but 3 spoiled cats. I

> live

> in Texas, currently do not work outside the home but have a BA in

> Psychology.

>

> I have struggled with health problems since I was a child. I have

> apparently

> suffered from PCOS (Polycystic Ovary Syndrome) since I was a kid and

> entered

> puberty at age 6 and have had health problems to one degree or another

> ever

> since.

>

> I was totally dismissed and negated by doctors from age 6 to my early

> 20's.

> I was told I most likely had PCOS, but a decade ago there was not much

> in the

> way of treatment options. I was put on birth control pills to

> regulate and

> lighten my menstrual periods. From age 21 to 27 I got very, very sick

> and

> could not find any doctors willing to figure out what was wrong with

> me

> instead of dismissing me as a hysterical fat woman who had

> psychosomatic

> illnesses. When I went to the doctor pleading for help because I had

> menstruated heavily for 3 weeks straight I was given antidepressants

> and diet

> pills. I went to the doctor repeatedly to be screened for diabetes

> because I

> had severe recurrant infections and unquenchable thirst and was given

> a basic

> urine test and when excess sugar was not detected, I was tested for

> HIV. I

> had an ongoing throat infection that came and went for almost 2 years

> between

> the ages of 25 and 27. I suffered yeast infections continuously from

> age 23

> to 27. I was told I had them because it is hard for fat women to keep

> clean

> " down there " . Again, total dismissal and negation of any legitimate

> medical

> problems.

>

> I got sicker and sicker and sicker from age 23 to 27. But I was

> whacked out

> on antidepressants and Xanax so I did not care at all. I was having

> migraines from my birth control pills and the answer from my primary

> care

> doctor was to increase the psych meds as it was most likely from

> " stress " . I

> was having severe fluid retention in my legs and once I nicked my shin

>

> shaving and the cut leaked clear fluid for months. I went to my

> doctor

> several times and he said it was just the fat pushing the fluid out

> and there

> was nothing they could do, and had I considered gastric bypass surgery

> to

> lose the weight?

>

> Finally the migraines were so bad I was taken to the ER. The

> neurologist who

> I followed up with took me off the pill and migraines went away within

> a

> week. I showed him the place on my leg in passing and he immediately

> referred me to a colleague who was an internist in the same

> professional

> building. I went straight from the neurologist to the internist and

> he

> diagnosed the infection as the beginnings of cellulitis and put me on

> heavy

> duty antibiotics and even so I have a large scar.

>

> Because of the fatigue, physical weakness, and swelling he referred me

> to a

> cardiologist. I actually found out I had a clean bill of cardiac

> health, it

> was not congestive heart failure, but I had poor circulation. I was

> sent to

> an endocrinologist, and I do have PCOS, and am type 2 diabetic, and

> have most

> likely been diabetic for years but the symptoms were dismissed.

>

> I am making slow but positive progress with the PCOS and diabetes. I

> also

> have arthritis in my hips and take medication for that too.

>

> A year and a half ago we had a bad wreck and I suffered a back and

> head

> injury. I have had back pain ever since.

>

> So, I am dealing with the PCOS and diabetes, which I am not responding

> as was

> hoped to the medications. And I also have the chronic back pain. Top

> it

> with debilitating fatigue and weakness and I am pretty much

> housebound. I go

> out when I can but almost always in a wheelchair unless it is a

> sedentary

> outing.

>

> I take medications and follow a moderate lowcarb diet for the diabetes

> and

> PCOS. I take Celebrex for my arthritis and tylenol for my back pain

> and am

> going to be starting up with a chiropractor next month.

>

> When I was taken to the ER after the wreck the doctor who I followed

> up with

> told me that there was no need to waste time treating my back, at my

> size

> there was nothing that could be done for it anyway. So I never got

> treatment

> for it after the initial triage evaluation.

>

> I really try to make an effort with doctors but have been verbally

> abused and

> otherwise mistreated by medical personnel so many times that I am just

> way

> too jaded to want to put myself in that position anymore. I could

> tell

> horror stories. If I was not so sick and weak I would have filed

> charges

> more than once but I did not have the strength to deal with it.

>

> I am going to be returning to the endocrinologist soon to see what

> other

> directions the PCOS/diabetes treatment can take as the current

> medication

> (Metformin) is not working for me as they had hoped.

>

> When I feel up to it I am a member of a local wellness center, but I

> rarely

> have the strength or tolerence of pain to deal with the physical

> effort

> needed to get to the therapy pools and then out and changed to return

> home.

> I really need to push myself to do it but it is very hard to

> self-motivate

> when you are so weak and tired that all you want to do is sleep.

>

> I had hoped to be better by now, but it seems like I am having a

> setback. I

> hope to see improvement with the chiropractor as far as pain and

> mobility and

> I hope that the endocrinologist will have some encouraging news too.

>

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> “Hold on to what is good, even if it's a handful of earth. Hold on to

> what you believe, even if it's a tree that stands by itself. Hold on

> to what you must do even, if it's a long way from here. Hold on to

> your life, even if it's easier to let go. " - Pueblo Prayer

August 22, 2000

BornOfMoonAndSea@... wrote:

Hi all,

My name is , I am 30, married with no kids but 3 spoiled cats.

I live

in Texas, currently do not work outside the home but have a BA in Psychology.

I have struggled with health problems since I was a child. I have

apparently

suffered from PCOS (Polycystic Ovary Syndrome) since I was a kid and

entered

puberty at age 6 and have had health problems to one degree or another

ever

since.

Hi -

Where

did you grow up? The reason I ask is that I went to elementary school

with a girl named , she was the first in our class to do everything...

boobs, period, everything. And started in Kindergarten or 1st grade.

I know she was wearing a bra in 2nd grade. It just seems so coincidental

that you and I are the same age, etc. Basically it made me very curious!!

I was totally dismissed and negated by doctors from

age 6 to my early 20's.

Sadly you

are in good company here about the doctors and such! Because as you

know, if you are female, and complain of symptoms that don't fit into "textbook"

definitions, you are having a psychiatric crisis!

I don't

take this real well, because I have worked in the medical field since age

12... I was a Jr. Volunteer at a local trauma center, in a 6 year period...

I gave the most volunteer hours of any Jr. Volunteer for that hospital...

1300 hours. 1982-1988! My senior year of high school, I spent

every weekend at the hospital. I was paid staff for the Children's

Hospital, and a Volunteer in the Maternity Unit, so i worked each every

other weekend, meaning I was there every weekend. I loved it,

that is why I did it!

I went

on to try to live my dreams.... applied to Nursing School, there was a

waiting list, so I went on to become a NREMT-Paramedic. I did get

accepted to the first Nursing Program I applied to, and turned it down

to get my 4 year in the state that I was a paramedic in. I loved

my job, I have things that I will never forget, some good, some bad; but

I was there and I made a difference in many peoples lives!

I can

talk the talk with doctors, and since I have all the knowledge I do, I

really and truly do NOT take it well when I am "talk down to"... that little

event is guaranteed to get a doctor/paramedic/nurse or whomever that feels

that urge to get an attitude at me, is "told off" by me!

My EMS

(Emergency Medical Services) career ended due to my allergies, and how

life threatening they are. I never gave up, I just kept trying to

get my "next dream on that imaginary list of what I wanted to accomplish

in my life"...

I kept

trying to make it through... I gave my paramedic career (last worked 9-96,

but resigned 2-97), went on to going to school full time for my Bachelor

of Science in Nursing. Was actually accepted into the program, was

just finishing up my sciences so I could do just Nursing and "fun" classes

during school... I spent more time in the ER than I did in school because

of the number of things I am allergic to, and the severity of the allergies

I have.

I just

got sicker and sicker! My allergies, encephalitis/meningitis (symptoms

started March 1997) that went untreated for 7 weeks before diagnosed....

I was told it was stress headaches, migraines, psychosomatic, BS, whatever....

No one believed me that the pain was as bad as it was, because I could

touch my chin to my chest..(in September 1999 I found out that I have HYPER

-Range Of Motion, so that is why I could touch my chin to my chest!)!!

But I

had EVERY OTHER SYMPTOMS of it being encephalitis / meningitis. It

was actually my sight that got me diagnosed in the first place... I had

paralysis of my superior oblique muscle in my right eye.

If that

year hadn't already totally sucked, it only got worse from there!

I got a job as a Residential Treatment Worker --Fulltime Nights, in a juvenile

residential treatment facility! I loved my job, loved working with

kids that were pretty screwed up, but they were kids, so there was a chance

of turning them around.

On June

7, 1997 I was found dead... I was pulseless & apneic due to being strangled

with a 2 foot long extension cord, that was still wrapped around my neck

when my supervisor walked on to the unit. The child that did it was

only 13. She was originally charged automatically as an adult with

Attempted First Degree Intentional Homicide. She was later waived

back to the Juvenile System with my permission. She plead guilty,

and when she was sentenced she was able to make a statement... she stood

up and told everyone in court that her only regret was that she had NOT

succeeded!!

Well,

she was released from prison, back to the custody of her Mom on July 10,

2000. The whole reason she was at the place I worked at, was because

she held a butcher knife to her mom's throat. Yet they released her

back to the custody of her Mom.... something doesn't sound right here!

Oh, My

God!!! I am sorry, I guess I got on a roll and just didn't shut up.

This is the first message that I opened when I came on line... and that

was OVER 90 minutes ago.

I will

say Good bye for now, so I don't bore you totally to death!!

I hope

you are having a good night...

Love

Always,

Anne

August 23, 2000

Hi ,

<<So, I am dealing with the PCOS and diabetes, which I am not responding as was hoped to the medications.>>

Welcome to the Gang!

Sorry to hear about the problems. It must be really hard on you. I am also diabetic, with chronic headaches, now surviving on Metformin, painkillers and nerve blocks.

Do feel free to vent, we are here for you!

Ling

January 13, 2008

Hi ,

My name is Marcie and my daughter was diagnosed about 4 years ago. She

was 8 at the time but has had episodes since she was 18 months. My

daughter was episode free for almost 4 years and now 13, they have come

back. Almost like a remission???? Anyway, we just had an appointment

with her Pfapa doc in NYC to confirm that they were back. Our doc told

us the only treatment is T & A or steroids. From what I have been

reading with out group that the T & A has helped some and not others. I

really hope it works for you. It's so hard to see them, especially when

they are so young, to go through this. My daughter went undiagnosed for

years and she went through all kinds of tests, needles and what-not.

Just give them hugs and kisses and get through each episode. My

daughter miss quite a few days of school over the years and I went to

her school and told them what was going through and to expect her

to be out. Elementary was fine and we had no problems. No she is in

Middle School and her school nurse seems to be giving us a little

hassel. No biggy. makes up her work and still is getting great

grades.. Actually, we just started and episode on Thursday.

Good luck and please let me know how it goes. If 's get real bad,

then I will do the same .

Marcie, mom to age 13, New Jersey

January 13, 2008