Re: Brigite's LONG story... there's no short way to put this stuff! Sorry!!!

[Guest guest]

OH Brigite, Except for the PTC, nothing sounds new! . . . We've had women with all your symptoms - but it looks like you have ALL the symptoms! . . . What we've found is that the dx's really don't matter . . . they just run up the cost of insurance - and make it unlikely that one will get private insurance in the future. The main thing is getting your implants out properly! (en bloc preferred, complete capsulectomy with drains at the minimum). . . Then taking extraordinarily good care of yourself while your body has a chance to heal. If you're like most of the other women, after a year, most of your symptoms will be dramatically improved, if not gone all together. When doctors act like yours have, it's terribly upsetting! . . . They don't call it "practicing" medicine by accident. I keep hoping they will get it right, but I'm probably dreaming!

.. .. I'd suggest seeing a doctor only when you have an immediate need. Otherwise, as you've found out, they can make matters worse by their attitude, or by the medications they offer. There is some disturbing information about root canals . . .Patty can fill you in on her experience. . . Breaking teeth are not uncommon among us! One other thing . .. Check all your medications/supplement for silicone dioxide. You may be very sensitive to it. Just eliminating all silica's, silicones from your diet and environment may give you some relief. Please send your story to the addresses I sent you! . . . They need to know how bad it gets. Hugs and prayers, Rogene

[Guest guest]

Brigite, WOW...that's all I have to say! What a nightmare journey

this has been for you! You will be on my daily prayer list, Brigite,

and please take good care of yourself and keep on moving towards a

healing solution. I'm so glad you didn't die from this horrific,

criminal immorality - that is, the deception and lies we have been

told by many doctors. If I had my way, it would be called attempted

murder.

Love & Prayers coming your way,

Sunny

--- In , " BRIGITE " <KissofSadness@...>

wrote:

>

> This turned out SO long, but there's no other way to include

> everything... so I apologize! I don't expect anyone to read this

> unless you're REALLY REALLY bored!!! Thanks though!!! I don't have

> much of a support system in my life, so it helped in a way just to

> type it all out...

>

>

> Well, for what it's worth -here's my story. (I imagine it's

probably

> not much different from many of you, although I know many of you

have

> gone through much more.)

>

> In 10/97, I was implanted. The doc told me the same thing they told

> all of you-that SALINE implants were the " SAFE " alternative to

> SILICONE implants. " If they leak, it's just saltwater and absorbs

> safely into your body. " " The complication rate was 10%, " and his

was

> only " 5%. " etc, etc... I went from A to D, plus had lipo from the

> hips down. I weighed about 140, up from my usual 110 at the time---

> because I had an undiagnosed thyroid disease from years of

starvation

> and taking diet pills.

>

> During the next year, something wasn't right with me. I stayed

sick,

> I suddenly had disabling anxiety. I had problems with asthma (which

> have since ceased.) My lungs were so tight it showed up on xray.

> Allergies worsened.

>

> I continued to gain weight, and got up to 220 within that 1 year.

> Doctors chalked it up to stress eating, but I knew that wasn't the

> case because I'd had anorexia for most of my life and never had a

> problem with over eating.

>

> I'd always been a top worker at my job, but found myself having to

> take long leaves to treat what doctors were calling a mental

> condition at the time. Then, by 12/98 I couldn't walk, had to be in

a

> completely blacked out room due to my optic nerves being so

swollen,

> had crossed eyes, blindness, vomited 24/7, had brain

> swelling/pressure and such severe migraines all I could do was

scream

> for about 3 months. It was like something out of a horror movie.

WV

> is underserved in Neurology, and our state was having many docs

leave

> at the time due to our EXTREMELY HIGH malpractice insurance fees

> having gone up. Only 1 place around had an MRI machine, so it took

> months to get properly diagnosed and treated for Pseudotumor

Cerebri

> (PTC).

>

> They chalked it up to the weight gain, and I was also diagnosed

with

> Hashimoto's Disease and hypothyroidism. I was put on Diamox,

Fioricet

> w/ Codiene, and Synthroid as well as Vicodin, Vicodin, Vicodin.

> (Eventually, I figured out if I used no pain meds at all, I would

> adjust to the pain in my head and learn to deal with it free of

meds,

> and I've done that for YEARS.)

>

> SSI considered me disabled from 04/98.

>

> During that time, I also fell and afterwards noticed a change in

> volume in one of my implants. I couldn't afford the fees to have

> anything done about it (since I could no longer worked), so I went

16

> months with an almost entirely leaked out implant in my body.

Because

> of PTC and thyroid disease, anesthesiologists who my PS consulted

> with said I'd need to be done in a hospital O.R. and put all the

way

> under. The PS wanted other docs present, so surgery was $15g total

> because I wanted BOTH replaced so they'd match, plus went to a DD

> 450cc's. I finally had the means between charging it and my parents

> paying some to have the surgery and replaced my implants 04/99.

(They

> later found out my first implants had a defective valve. I did get

> $1200 back.) These are Mentor 475cc, but my doc UNDERFILLED them to

> make them soft and natural looking.

>

> By 9/99, the PTC got worse and I had a spinal tap to drain off the

> elevated brain fluid levels. It helped for a while, but it was a

> horrible ordeal that I'd rather not go through again if I can avoid

> it by using high dose Diamox when I have trouble.

>

> Also, during 99, I was slowly developing joint pain and stiffness.

By

> 2000, it was so bad my doctor sent me to a rheumatologist. He

> diagnosed Osteoarthritis, connective tissue disease (degenerative

> joint disease), a positive ANA, and fibromyalgia. (NEW doctors

never

> believe I truly have fibromyalgia, so I've since also been

diagnosed

> by 2 orthopedists, SEVERAL neurologists, 2 internal med

specialists,

> and my own PCP.) Since then, I was also later diagnosed with

Chronic

> Fatigue Syndrome as my energy declined over the years.

>

> The rheumatologist wanted me on Plaquenil, but it made me so sick

> there was no way. I've tried arthritis meds, but they all made me

so

> sick. So, I took Anaprox DS for the past 6 years or so. I always

> refused muscle relaxers or heavier drugs. (My doc finally took me

off

> of Anaprox DS due to heart risks, so now I'm living without an anti

> inflammatory -which is hard.)

>

> Around 02, I started hearing about silicone poisoning by SALINE

> implants. To make a long story short, I sought treatment to no

avail

> other than the Alternative Health Center -which, as I said in

another

> post, my ins. didn't cover.

>

> Then, in 2003 my sister was murdered. I didn't take care of myself

at

> all that year. I gained back weight I'd lost -which always makes

> things worse. I didn't take meds like I was supposed to.

>

> In 2004, as more info was appearing on the net about SP, I sought

> treatment again. I went to 2 internal med (IM) specialists. They

> LITERALLY made jokes about me to each other right in front of me.

> They didn't believe I had anything but a case of hypochondria.

Then,

> they said " Well, if you REALLY had all these symptoms or diseases,

> you'd have LUPUS (which I have 7/10 or so symptoms of), and

Sjogren's

> Syndrome (which I have every symptom of). "

>

> Mind you, during this time I had also been seeing PS's and seeking

> help that route. Mine had since retired, so I called every PS

around.

> I went in to see one in 2002 and he said " I personally never

thought

> it was possible, but I honestly can't tell you your implants are

NOT

> making you sick. " (And he'd remove them/lift for about $16/g ---

since

> I have to be put totally under.) As it turned out, the one I'd seen

> in 02 was a friend of one of the internal med specialists who

thought

> I was a hypochondriac. So, the IM doc gave the PS a call. The PS

> immediately remembered my name and said " Since I saw her, I make my

> patients sign a waiver saying implants may have a connection to

> fibromyalgia. " The IM's eyes were wider now. Then my results came

> back -positive ANA. So they added that they felt I probably had

lupus

> and Sjogren's and suggested further testing and treatment.

>

> They soon after closed due to something illegal -one of them went

to

> prison. Because I KNOW I will not take medications for lupus, I

never

> looked into it any further.

>

> My PCP does ANA tests regularly on me, and the odd thing is that

she

> finds them to be negative, but the rheumatologist and IM found them

> positive. The best thing I can come up with to explain that is that

> if I do have Lupus (which LITERALLY matches all my symptoms right

> down to the sun sensitivity and rashing), it does seem to come in

> episodes. There are times of the year I literally can't move. I

feel

> under attack from head to toe, and can't get out of bed, am COVERED

> in rashes... then other times where I'm still NEVER EVER " well, "

but

> can at least clean house and do laundry.

>

> I know you ALL know how it is when you say you're having a " good "

day

> or a " good " spell ----It doesn't really mean you're well at all

and

> you're NEVER without pain, but some times there are

days/weeks/months

> you may have LESS pain that you may have had the rest of the year.

>

> I very much feel in the back of my mind that it's lupus, and the

> symptoms are like a mirror to me... other people with it are like a

> mirror to me... and it pretty much sums up most of the things I

have

> in " one word " and makes sense of all the scattered diagnosis, but

at

> the same time I have this feeling like IF I IGNORE IT, IT WILL GO

> AWAY! Then when I go out in the sun just to and from the car, and

in

> the car (tinted windows) ---my skin isn't letting me ignore it. I

> just really don't know what to do about it. Not to mention, with

each

> diagnosis ---our health insurance premium rises. My husband works

for

> a small company, and he's barely able to insure people as it is.

The

> cost of each employee's insurance depends on what medical problems

> they have... I can only imagine what lupus would do to it. We

already

> pay $500/mo for his portion as it stands.

>

> I don't even factor in headache pain, because it's literally almost

> 24/7, with about 2 migraines per day ---I have THANKFULLY learned

to

> be able to ignore the pain in my head. My doc gave me samples of a

> drug called Dolgic Plus that took about 80% of the pain away, and

> when it wore off and the pain came back it was like a ton of bricks

> hitting me and I feared I would lose my high pain tolerance, so I

> wouldn't take it. I do take Fioricet sometimes, though, if I have

to

> ride in a car over a few minutes.

>

> That's another thing... I *STAY* nauseated, and sometimes smells

> (perfume, the rare chance I smell cigarettes, garbage, bad odors)

or

> car rides make me throw up. I take Phenergen pretty regularly. I

> can't ride in a car over about half hour, even with stops. I tried

> going 4 hours to a PS in Lexington, KY (because surgery is MUCH

> cheaper there than here, but still about $8g) and that's when I

blew

> out a retina because the migraine was so severe.

>

> I also have Polycystic Ovarian Syndrome (PCOS) that came about the

> same year as implanted, and Pelvic Inflammatory Disease ---despite

> that I have NEVER had STD's which are usually the cause. I'm

pushing

> my doctor right now to do a hysterectomy on me because the issues

> with these are so bad and literally affect me weeks out of every

> month...and since I don't want to live on pain meds -I want them

OUT.

>

> One more thing I'd like to compare with you all... do you have

> problems with your teeth cracking up? Despite that I take good care

> of my teeth and don't have a lot of sweets (in fact I used to be a

> dental assistant), my teeth literally just crack up and fall apart.

> This all started about 2 yrs ago. I've had 3 root canals, need more

> crowns, and had to have 1 cut out in back............ another

kicker,

> the last one I had to have cut out never once hurt. I got the

bright

> idea to try going to CURVES (very mild exercise program here) and

> afterwards had so much pressure in my head that it caused an

> immediate and severe toothache in a very back tooth. My dentist

took

> me right in that evening, and it was showing inflammation.

>

> For years I've had pain in my teeth on a daily basis-chalked up to

> fibromyalgia, but the past year or so it seems like any over

exertion

> makes them flare up into abcesses. Anyone else? Our dental

insurance

> is VERY minimal, and it's just so costly. My husband has to borrow

> money from his boss for my dental work and then do side jobs to pay

> for it.

>

> I don't have the energy to have lunch or dinner with friends, or

even

> see friends face to face because TALKING over a few minutes even

ZAPS

> me (which is why the net is so great). It's all I can do to keep up

> with my house, and my husband or spend time with him when he's not

> working.

>

> Well, I apologize for how lengthy this is...................... but

> there's no short way to say any of this. If you've read this far, I

> appreciate your time. You're all in my prayers.

>

> Brigite in WV

>

[Guest guest]

-Brigite,

Your story is amazing to me. You have trudged on in spite of these

awful things. How terrible about your sister.

Are you getting your implants out now? Based on your medical

history I would encourage you to do so....if you have not already

made that decision for yourself. We are here for you thru this.....

-- In , " BRIGITE " <KissofSadness@...>

wrote:

>

> This turned out SO long, but there's no other way to include

> everything... so I apologize! I don't expect anyone to read this

> unless you're REALLY REALLY bored!!! Thanks though!!! I don't have

> much of a support system in my life, so it helped in a way just to

> type it all out...

>

>

> Well, for what it's worth -here's my story. (I imagine it's

probably

> not much different from many of you, although I know many of you

have

> gone through much more.)

>

> In 10/97, I was implanted. The doc told me the same thing they

told

> all of you-that SALINE implants were the " SAFE " alternative to

> SILICONE implants. " If they leak, it's just saltwater and absorbs

> safely into your body. " " The complication rate was 10%, " and his

was

> only " 5%. " etc, etc... I went from A to D, plus had lipo from the

> hips down. I weighed about 140, up from my usual 110 at the time---

> because I had an undiagnosed thyroid disease from years of

starvation

> and taking diet pills.

>

> During the next year, something wasn't right with me. I stayed

sick,

> I suddenly had disabling anxiety. I had problems with asthma

(which

> have since ceased.) My lungs were so tight it showed up on xray.

> Allergies worsened.

>

> I continued to gain weight, and got up to 220 within that 1 year.

> Doctors chalked it up to stress eating, but I knew that wasn't the

> case because I'd had anorexia for most of my life and never had a

> problem with over eating.

>

> I'd always been a top worker at my job, but found myself having to

> take long leaves to treat what doctors were calling a mental

> condition at the time. Then, by 12/98 I couldn't walk, had to be

in a

> completely blacked out room due to my optic nerves being so

swollen,

> had crossed eyes, blindness, vomited 24/7, had brain

> swelling/pressure and such severe migraines all I could do was

scream

> for about 3 months. It was like something out of a horror movie.

WV

> is underserved in Neurology, and our state was having many docs

leave

> at the time due to our EXTREMELY HIGH malpractice insurance fees

> having gone up. Only 1 place around had an MRI machine, so it took

> months to get properly diagnosed and treated for Pseudotumor

Cerebri

> (PTC).

>

> They chalked it up to the weight gain, and I was also diagnosed

with

> Hashimoto's Disease and hypothyroidism. I was put on Diamox,

Fioricet

> w/ Codiene, and Synthroid as well as Vicodin, Vicodin, Vicodin.

> (Eventually, I figured out if I used no pain meds at all, I would

> adjust to the pain in my head and learn to deal with it free of

meds,

> and I've done that for YEARS.)

>

> SSI considered me disabled from 04/98.

>

> During that time, I also fell and afterwards noticed a change in

> volume in one of my implants. I couldn't afford the fees to have

> anything done about it (since I could no longer worked), so I went

16

> months with an almost entirely leaked out implant in my body.

Because

> of PTC and thyroid disease, anesthesiologists who my PS consulted

> with said I'd need to be done in a hospital O.R. and put all the

way

> under. The PS wanted other docs present, so surgery was $15g total

> because I wanted BOTH replaced so they'd match, plus went to a DD

> 450cc's. I finally had the means between charging it and my

parents

> paying some to have the surgery and replaced my implants 04/99.

(They

> later found out my first implants had a defective valve. I did get

> $1200 back.) These are Mentor 475cc, but my doc UNDERFILLED them

to

> make them soft and natural looking.

>

> By 9/99, the PTC got worse and I had a spinal tap to drain off the

> elevated brain fluid levels. It helped for a while, but it was a

> horrible ordeal that I'd rather not go through again if I can

avoid

> it by using high dose Diamox when I have trouble.

>

> Also, during 99, I was slowly developing joint pain and stiffness.

By

> 2000, it was so bad my doctor sent me to a rheumatologist. He

> diagnosed Osteoarthritis, connective tissue disease (degenerative

> joint disease), a positive ANA, and fibromyalgia. (NEW doctors

never

> believe I truly have fibromyalgia, so I've since also been

diagnosed

> by 2 orthopedists, SEVERAL neurologists, 2 internal med

specialists,

> and my own PCP.) Since then, I was also later diagnosed with

Chronic

> Fatigue Syndrome as my energy declined over the years.

>

> The rheumatologist wanted me on Plaquenil, but it made me so sick

> there was no way. I've tried arthritis meds, but they all made me

so

> sick. So, I took Anaprox DS for the past 6 years or so. I always

> refused muscle relaxers or heavier drugs. (My doc finally took me

off

> of Anaprox DS due to heart risks, so now I'm living without an

anti

> inflammatory -which is hard.)

>

> Around 02, I started hearing about silicone poisoning by SALINE

> implants. To make a long story short, I sought treatment to no

avail

> other than the Alternative Health Center -which, as I said in

another

> post, my ins. didn't cover.

>

> Then, in 2003 my sister was murdered. I didn't take care of myself

at

> all that year. I gained back weight I'd lost -which always makes

> things worse. I didn't take meds like I was supposed to.

>

> In 2004, as more info was appearing on the net about SP, I sought

> treatment again. I went to 2 internal med (IM) specialists. They

> LITERALLY made jokes about me to each other right in front of me.

> They didn't believe I had anything but a case of hypochondria.

Then,

> they said " Well, if you REALLY had all these symptoms or diseases,

> you'd have LUPUS (which I have 7/10 or so symptoms of), and

Sjogren's

> Syndrome (which I have every symptom of). "

>

> Mind you, during this time I had also been seeing PS's and seeking

> help that route. Mine had since retired, so I called every PS

around.

> I went in to see one in 2002 and he said " I personally never

thought

> it was possible, but I honestly can't tell you your implants are

NOT

> making you sick. " (And he'd remove them/lift for about $16/g ---

since

> I have to be put totally under.) As it turned out, the one I'd

seen

> in 02 was a friend of one of the internal med specialists who

thought

> I was a hypochondriac. So, the IM doc gave the PS a call. The PS

> immediately remembered my name and said " Since I saw her, I make

my

> patients sign a waiver saying implants may have a connection to

> fibromyalgia. " The IM's eyes were wider now. Then my results came

> back -positive ANA. So they added that they felt I probably had

lupus

> and Sjogren's and suggested further testing and treatment.

>

> They soon after closed due to something illegal -one of them went

to

> prison. Because I KNOW I will not take medications for lupus, I

never

> looked into it any further.

>

> My PCP does ANA tests regularly on me, and the odd thing is that

she

> finds them to be negative, but the rheumatologist and IM found

them

> positive. The best thing I can come up with to explain that is

that

> if I do have Lupus (which LITERALLY matches all my symptoms right

> down to the sun sensitivity and rashing), it does seem to come in

> episodes. There are times of the year I literally can't move. I

feel

> under attack from head to toe, and can't get out of bed, am

COVERED

> in rashes... then other times where I'm still NEVER EVER " well, "

but

> can at least clean house and do laundry.

>

> I know you ALL know how it is when you say you're having a " good "

day

> or a " good " spell ----It doesn't really mean you're well at all

and

> you're NEVER without pain, but some times there are

days/weeks/months

> you may have LESS pain that you may have had the rest of the year.

>

> I very much feel in the back of my mind that it's lupus, and the

> symptoms are like a mirror to me... other people with it are like

a

> mirror to me... and it pretty much sums up most of the things I

have

> in " one word " and makes sense of all the scattered diagnosis, but

at

> the same time I have this feeling like IF I IGNORE IT, IT WILL GO

> AWAY! Then when I go out in the sun just to and from the car, and

in

> the car (tinted windows) ---my skin isn't letting me ignore it. I

> just really don't know what to do about it. Not to mention, with

each

> diagnosis ---our health insurance premium rises. My husband works

for

> a small company, and he's barely able to insure people as it is.

The

> cost of each employee's insurance depends on what medical problems

> they have... I can only imagine what lupus would do to it. We

already

> pay $500/mo for his portion as it stands.

>

> I don't even factor in headache pain, because it's literally

almost

> 24/7, with about 2 migraines per day ---I have THANKFULLY learned

to

> be able to ignore the pain in my head. My doc gave me samples of a

> drug called Dolgic Plus that took about 80% of the pain away, and

> when it wore off and the pain came back it was like a ton of

bricks

> hitting me and I feared I would lose my high pain tolerance, so I

> wouldn't take it. I do take Fioricet sometimes, though, if I have

to

> ride in a car over a few minutes.

>

> That's another thing... I *STAY* nauseated, and sometimes smells

> (perfume, the rare chance I smell cigarettes, garbage, bad odors)

or

> car rides make me throw up. I take Phenergen pretty regularly. I

> can't ride in a car over about half hour, even with stops. I tried

> going 4 hours to a PS in Lexington, KY (because surgery is MUCH

> cheaper there than here, but still about $8g) and that's when I

blew

> out a retina because the migraine was so severe.

>

> I also have Polycystic Ovarian Syndrome (PCOS) that came about the

> same year as implanted, and Pelvic Inflammatory Disease ---despite

> that I have NEVER had STD's which are usually the cause. I'm

pushing

> my doctor right now to do a hysterectomy on me because the issues

> with these are so bad and literally affect me weeks out of every

> month...and since I don't want to live on pain meds -I want them

OUT.

>

> One more thing I'd like to compare with you all... do you have

> problems with your teeth cracking up? Despite that I take good

care

> of my teeth and don't have a lot of sweets (in fact I used to be a

> dental assistant), my teeth literally just crack up and fall

apart.

> This all started about 2 yrs ago. I've had 3 root canals, need

more

> crowns, and had to have 1 cut out in back............ another

kicker,

> the last one I had to have cut out never once hurt. I got the

bright

> idea to try going to CURVES (very mild exercise program here) and

> afterwards had so much pressure in my head that it caused an

> immediate and severe toothache in a very back tooth. My dentist

took

> me right in that evening, and it was showing inflammation.

>

> For years I've had pain in my teeth on a daily basis-chalked up to

> fibromyalgia, but the past year or so it seems like any over

exertion

> makes them flare up into abcesses. Anyone else? Our dental

insurance

> is VERY minimal, and it's just so costly. My husband has to borrow

> money from his boss for my dental work and then do side jobs to

pay

> for it.

>

> I don't have the energy to have lunch or dinner with friends, or

even

> see friends face to face because TALKING over a few minutes even

ZAPS

> me (which is why the net is so great). It's all I can do to keep

up

> with my house, and my husband or spend time with him when he's not

> working.

>

> Well, I apologize for how lengthy this is......................

but

> there's no short way to say any of this. If you've read this far,

I

> appreciate your time. You're all in my prayers.

>

> Brigite in WV

>