New to the group

July 20, 2001

Welcome and Ross!

Hope you will both find this an interesting site. Sometimes I just can't

wait to get " my turn " on the computer (3 kids and a hubby who likes to play

games) to see what's up with the CMT group (My husband is extremely

supportive but he's also a sweet idiot! He tells me, " Honey, you got some

more Shark Tooth mail! " ) I think Ross will enjoy it too! Come on Ross, I

double dog dare ya to write!

in Texas

----- Original Message -----

From: Insabella, <_Insabella@...>

'egroups' < >

Sent: Friday, July 20, 2001 9:37 AM

Subject: [] New to the group

> Hello Group,

> My name is and I am maried to Ross, who was diagnosed with CMT back

in

> the sixties. He is now 46, and he has what I think is a strong presence of

> CMT. When he was about 13 he began to notice that he couldn't run or climb

> stairs. His legs felt like heavy weights. He was a very active kid,

captain

> of all the teams, etc..and he hid his condition for a couple of years but

> could no longer play ball or run. When he was in high school, a gym

teacher

> who had had his two brothers and was looking forward to the athletic

prowess

> of another of the clan, noticed that my Ross couldn't even do a jumping

> jack. He sent him to the school nurse, and from there doctors, and he

ended

> up down in land at the NIH. He took the train back and forth to

land

> from Newark on weekends for a while, where they poked, prodded, and

injected

> steroids in an attempt to help him. He did regain the strength in his

hands

> (although there is loss of sensation),but his legs didn't fare so well.

He

> has great thighs, (I'm jealous!) but his calf muscles and foot muscles are

> very affected. He has drop foot, and hammer toes and no calf muscles.

> He has a good understanding of how the disease has affected him, but he

has

> never had conversations with other people who have CMT. He is very curious

> as to how other people have fared over the years. When I told him I had

> joined this group, he was very interested. Want to know what his first

> question was? I told him about Gretchen, and the book she's writing, and

how

> she was about his age and was diagnosed at about the same time. His first

> response was, Is she still up and around? Coming from someone who has the

> condition, I guess this is a fair question. He wants to know how people do

> as the years go on. He says that every morning when he gets up, and puts

his

> feet on the ground, and can walk for another day, that he is grateful. He

> often has pain episodes that last days or weeks. He takes alot of Tylenol

> and and Advil, and eventually the pain subsides. He seems to feel that he

is

> getting weaker in his legs, and he stumbles a bit more frequently these

> days, but he also works very hard and I think he drives himself because he

> compensates for what he perceives as his shortcoming. What I see is a

world

> that has no clue of the challenge walking is, or the pain, or the feelings

> that a person has when they have a disease that isn't always evident if

you

> don't know a person has it, or if people do know you have it, they tend to

> not have any idea of the difficulties simple things like walking are. For

> instance, we went to New York one Christmas with friends, 2 of whom have

> known Ross for years, and they didn't get it that it would have been nice

to

> walk a little slower so he could keep up. They were way ahead of us, and

> just kept going. When stuff like that happens, I get so protective of

him.

> He and I together know, and we even laugh together when he trips over

> nothing. Please don't take that the wrong way, but I am closest to him and

> we deal with it.

> I am going to get Gretchen's book for him when it comes out, I really

think

> it would be great for him to relate to others that go through life with

the

> same challenges as him.

> So, that is some of who we are, and I look forward to talking with all of

> you.

>

July 20, 2001

Hi!

How can he refuse a double dog dare! It's Friday, and we're going to have

our weekly bite to eat at the local pub, and I am am going to tell him about

all the people I met online today. This message is getting printed!

Talk soon,

-----Original Message-----

From: Mr. Bracamontes [mailto:bracamontes@...]

Sent: Friday, July 20, 2001 3:15 PM

Subject: Re: [] New to the group

Welcome and Ross!

Hope you will both find this an interesting site. Sometimes I just can't

wait to get " my turn " on the computer (3 kids and a hubby who likes to play

games) to see what's up with the CMT group (My husband is extremely

supportive but he's also a sweet idiot! He tells me, " Honey, you got some

more Shark Tooth mail! " ) I think Ross will enjoy it too! Come on Ross, I

double dog dare ya to write!

in Texas

----- Original Message -----

From: Insabella, <_Insabella@...>

'egroups' < >

Sent: Friday, July 20, 2001 9:37 AM

Subject: [] New to the group

> Hello Group,

> My name is and I am maried to Ross, who was diagnosed with CMT back

in

> the sixties. He is now 46, and he has what I think is a strong presence of

> CMT. When he was about 13 he began to notice that he couldn't run or climb

> stairs. His legs felt like heavy weights. He was a very active kid,

captain

> of all the teams, etc..and he hid his condition for a couple of years but

> could no longer play ball or run. When he was in high school, a gym

teacher

> who had had his two brothers and was looking forward to the athletic

prowess

> of another of the clan, noticed that my Ross couldn't even do a jumping

> jack. He sent him to the school nurse, and from there doctors, and he

ended

> up down in land at the NIH. He took the train back and forth to

land

> from Newark on weekends for a while, where they poked, prodded, and

injected

> steroids in an attempt to help him. He did regain the strength in his

hands

> (although there is loss of sensation),but his legs didn't fare so well.

He

> has great thighs, (I'm jealous!) but his calf muscles and foot muscles are

> very affected. He has drop foot, and hammer toes and no calf muscles.

> He has a good understanding of how the disease has affected him, but he

has

> never had conversations with other people who have CMT. He is very curious

> as to how other people have fared over the years. When I told him I had

> joined this group, he was very interested. Want to know what his first

> question was? I told him about Gretchen, and the book she's writing, and

how

> she was about his age and was diagnosed at about the same time. His first

> response was, Is she still up and around? Coming from someone who has the

> condition, I guess this is a fair question. He wants to know how people do

> as the years go on. He says that every morning when he gets up, and puts

his

> feet on the ground, and can walk for another day, that he is grateful. He

> often has pain episodes that last days or weeks. He takes alot of Tylenol

> and and Advil, and eventually the pain subsides. He seems to feel that he

is

> getting weaker in his legs, and he stumbles a bit more frequently these

> days, but he also works very hard and I think he drives himself because he

> compensates for what he perceives as his shortcoming. What I see is a

world

> that has no clue of the challenge walking is, or the pain, or the feelings

> that a person has when they have a disease that isn't always evident if

you

> don't know a person has it, or if people do know you have it, they tend to

> not have any idea of the difficulties simple things like walking are. For

> instance, we went to New York one Christmas with friends, 2 of whom have

> known Ross for years, and they didn't get it that it would have been nice

to

> walk a little slower so he could keep up. They were way ahead of us, and

> just kept going. When stuff like that happens, I get so protective of

him.

> He and I together know, and we even laugh together when he trips over

> nothing. Please don't take that the wrong way, but I am closest to him and

> we deal with it.

> I am going to get Gretchen's book for him when it comes out, I really

think

> it would be great for him to relate to others that go through life with

the

> same challenges as him.

> So, that is some of who we are, and I look forward to talking with all of

> you.

>

July 20, 2001

Hi and Ross,

Welcome to the group. Most of the time I just " lurk " here.

I am married to Dave, who was diagnosed with CMT when he

was 20. He is now 32 and with the help of in-shoe othotics

leads a very normal and (mostly) pain free life. We are

expecting our first child in September and life is good!

Well back to work for me. I just wanted you to know that

there is another wife out there to talk to and maybe

compare notes.

Have a great weekend all~

Robin

-----Original Message-----

From: Insabella, [mailto:_Insabella@...]

Sent: Friday, July 20, 2001 7:37 AM

'egroups'

Subject: [] New to the group

Hello Group,

My name is and I am maried to Ross, who was diagnosed with CMT back in

the sixties. He is now 46, and he has what I think is a strong presence of

CMT. When he was about 13 he began to notice that he couldn't run or climb

stairs. His legs felt like heavy weights. He was a very active kid, captain

of all the teams, etc..and he hid his condition for a couple of years but

could no longer play ball or run. When he was in high school, a gym teacher

who had had his two brothers and was looking forward to the athletic prowess

of another of the clan, noticed that my Ross couldn't even do a jumping

jack. He sent him to the school nurse, and from there doctors, and he ended

up down in land at the NIH. He took the train back and forth to land

from Newark on weekends for a while, where they poked, prodded, and injected

steroids in an attempt to help him. He did regain the strength in his hands

(although there is loss of sensation),but his legs didn't fare so well. He

has great thighs, (I'm jealous!) but his calf muscles and foot muscles are

very affected. He has drop foot, and hammer toes and no calf muscles.

He has a good understanding of how the disease has affected him, but he has

never had conversations with other people who have CMT. He is very curious

as to how other people have fared over the years. When I told him I had

joined this group, he was very interested. Want to know what his first

question was? I told him about Gretchen, and the book she's writing, and how

she was about his age and was diagnosed at about the same time. His first

response was, Is she still up and around? Coming from someone who has the

condition, I guess this is a fair question. He wants to know how people do

as the years go on. He says that every morning when he gets up, and puts his

feet on the ground, and can walk for another day, that he is grateful. He

often has pain episodes that last days or weeks. He takes alot of Tylenol

and and Advil, and eventually the pain subsides. He seems to feel that he is

getting weaker in his legs, and he stumbles a bit more frequently these

days, but he also works very hard and I think he drives himself because he

compensates for what he perceives as his shortcoming. What I see is a world

that has no clue of the challenge walking is, or the pain, or the feelings

that a person has when they have a disease that isn't always evident if you

don't know a person has it, or if people do know you have it, they tend to

not have any idea of the difficulties simple things like walking are. For

instance, we went to New York one Christmas with friends, 2 of whom have

known Ross for years, and they didn't get it that it would have been nice to

walk a little slower so he could keep up. They were way ahead of us, and

just kept going. When stuff like that happens, I get so protective of him.

He and I together know, and we even laugh together when he trips over

nothing. Please don't take that the wrong way, but I am closest to him and

we deal with it.

I am going to get Gretchen's book for him when it comes out, I really think

it would be great for him to relate to others that go through life with the

same challenges as him.

So, that is some of who we are, and I look forward to talking with all of

you.

July 20, 2001

Welcome Ross and ,

My name is Bill, I am a 43 year old man who was diagnosed with CMT in 1973.

We have a bit in common. My diagnosis was the direct result of intervention

by one of my coaches. My baseball coach to be exact. I could hit, catch and

throw but I ran like a desert tortoise with arthritis. After my diagnosis my

doctor told me that I should refrain from any strenuous physical activity

etc. Of course I did what any 15 year old teenager would do, I ignored him.

In my senior year of highschool I lettered in football, baseball and

wrestling. I never did go out for cross-country or track though.

Sometimes I feel guilty posting on the site because compared to most

of my CMT friends I have very minor symptoms. I have the classic pes cavus

foot and the hammer toes, very skinny ankles and small calf muscles. But I

do have calf muscles, they are as hard as a rock. I exercise strenuously 5

days a week and have my entire life. I gave up playing softball last year

but only because it took up to much of my time. (Translation: my girlfriend

was locking me out of the house.) I still compete in martial arts and

mountain biking competitions. I don't always win but I still compete. I have

always had to work so much harder to receive the same results as athletes

without CMT. I am the most stubborn and bull headed person I know. If you

tell me I can't do it than I will have to do it. Anyway, enough of my

ramblings. If the site is a little intimidating at first, feel free to

e-mail me directly at bill@... and I will be happy to help

any way I can. We have an awesome group of people here.

Regards,

BC

----- Original Message -----

From: Insabella, <_Insabella@...>

'egroups' < >

Sent: Friday, July 20, 2001 7:37 AM

Subject: [] New to the group

> Hello Group,

> My name is and I am maried to Ross, who was diagnosed with CMT back

in

> the sixties. He is now 46, and he has what I think is a strong presence of

> CMT. When he was about 13 he began to notice that he couldn't run or climb

> stairs. His legs felt like heavy weights. He was a very active kid,

captain

> of all the teams, etc..and he hid his condition for a couple of years but

> could no longer play ball or run. When he was in high school, a gym

teacher

> who had had his two brothers and was looking forward to the athletic

prowess

> of another of the clan, noticed that my Ross couldn't even do a jumping

> jack. He sent him to the school nurse, and from there doctors, and he

ended

> up down in land at the NIH. He took the train back and forth to

land

> from Newark on weekends for a while, where they poked, prodded, and

injected

> steroids in an attempt to help him. He did regain the strength in his

hands

> (although there is loss of sensation),but his legs didn't fare so well.

He

> has great thighs, (I'm jealous!) but his calf muscles and foot muscles are

> very affected. He has drop foot, and hammer toes and no calf muscles.

> He has a good understanding of how the disease has affected him, but he

has

> never had conversations with other people who have CMT. He is very curious

> as to how other people have fared over the years. When I told him I had

> joined this group, he was very interested. Want to know what his first

> question was? I told him about Gretchen, and the book she's writing, and

how

> she was about his age and was diagnosed at about the same time. His first

> response was, Is she still up and around? Coming from someone who has the

> condition, I guess this is a fair question. He wants to know how people do

> as the years go on. He says that every morning when he gets up, and puts

his

> feet on the ground, and can walk for another day, that he is grateful. He

> often has pain episodes that last days or weeks. He takes alot of Tylenol

> and and Advil, and eventually the pain subsides. He seems to feel that he

is

> getting weaker in his legs, and he stumbles a bit more frequently these

> days, but he also works very hard and I think he drives himself because he

> compensates for what he perceives as his shortcoming. What I see is a

world

> that has no clue of the challenge walking is, or the pain, or the feelings

> that a person has when they have a disease that isn't always evident if

you

> don't know a person has it, or if people do know you have it, they tend to

> not have any idea of the difficulties simple things like walking are. For

> instance, we went to New York one Christmas with friends, 2 of whom have

> known Ross for years, and they didn't get it that it would have been nice

to

> walk a little slower so he could keep up. They were way ahead of us, and

> just kept going. When stuff like that happens, I get so protective of

him.

> He and I together know, and we even laugh together when he trips over

> nothing. Please don't take that the wrong way, but I am closest to him and

> we deal with it.

> I am going to get Gretchen's book for him when it comes out, I really

think

> it would be great for him to relate to others that go through life with

the

> same challenges as him.

> So, that is some of who we are, and I look forward to talking with all of

> you.

>

July 23, 2001

Hi there , and Everyone,

Just wanted to let you know that I extended that Double Dog Dare (I love

that) to Ross. He was very interested in all of the messages I printed out

and showed to him. So, sooner or later, he can be hard to pin down for

things like email, he will post.

Gretchen, can you please send me another invitation to join at my home

email? This one is at work, and I deleted the original invite. The address

is: insabella@...

It is very much appreciated!

Oh, and I have a crazy kind of observation...you know how the feet are so

affected, well, Ross has the absolute most smooth and soft feet. I kind of

figured its because he can't walk around barefoot, but they sure are nice

for warm footsies in the winter!

-----Original Message-----

From: Mr. Bracamontes [mailto:bracamontes@...]

Sent: Friday, July 20, 2001 3:15 PM

Subject: Re: [] New to the group

Welcome and Ross!

Hope you will both find this an interesting site. Sometimes I just can't

wait to get " my turn " on the computer (3 kids and a hubby who likes to play

games) to see what's up with the CMT group (My husband is extremely

supportive but he's also a sweet idiot! He tells me, " Honey, you got some

more Shark Tooth mail! " ) I think Ross will enjoy it too! Come on Ross, I

double dog dare ya to write!

in Texas

----- Original Message -----

From: Insabella, <_Insabella@...>

'egroups' < >

Sent: Friday, July 20, 2001 9:37 AM

Subject: [] New to the group

> Hello Group,

> My name is and I am maried to Ross, who was diagnosed with CMT back

in

> the sixties. He is now 46, and he has what I think is a strong presence of

> CMT. When he was about 13 he began to notice that he couldn't run or climb

> stairs. His legs felt like heavy weights. He was a very active kid,

captain

> of all the teams, etc..and he hid his condition for a couple of years but

> could no longer play ball or run. When he was in high school, a gym

teacher

> who had had his two brothers and was looking forward to the athletic

prowess

> of another of the clan, noticed that my Ross couldn't even do a jumping

> jack. He sent him to the school nurse, and from there doctors, and he

ended

> up down in land at the NIH. He took the train back and forth to

land

> from Newark on weekends for a while, where they poked, prodded, and

injected

> steroids in an attempt to help him. He did regain the strength in his

hands

> (although there is loss of sensation),but his legs didn't fare so well.

He

> has great thighs, (I'm jealous!) but his calf muscles and foot muscles are

> very affected. He has drop foot, and hammer toes and no calf muscles.

> He has a good understanding of how the disease has affected him, but he

has

> never had conversations with other people who have CMT. He is very curious

> as to how other people have fared over the years. When I told him I had

> joined this group, he was very interested. Want to know what his first

> question was? I told him about Gretchen, and the book she's writing, and

how

> she was about his age and was diagnosed at about the same time. His first

> response was, Is she still up and around? Coming from someone who has the

> condition, I guess this is a fair question. He wants to know how people do

> as the years go on. He says that every morning when he gets up, and puts

his

> feet on the ground, and can walk for another day, that he is grateful. He

> often has pain episodes that last days or weeks. He takes alot of Tylenol

> and and Advil, and eventually the pain subsides. He seems to feel that he

is

> getting weaker in his legs, and he stumbles a bit more frequently these

> days, but he also works very hard and I think he drives himself because he

> compensates for what he perceives as his shortcoming. What I see is a

world

> that has no clue of the challenge walking is, or the pain, or the feelings

> that a person has when they have a disease that isn't always evident if

you

> don't know a person has it, or if people do know you have it, they tend to

> not have any idea of the difficulties simple things like walking are. For

> instance, we went to New York one Christmas with friends, 2 of whom have

> known Ross for years, and they didn't get it that it would have been nice

to

> walk a little slower so he could keep up. They were way ahead of us, and

> just kept going. When stuff like that happens, I get so protective of

him.

> He and I together know, and we even laugh together when he trips over

> nothing. Please don't take that the wrong way, but I am closest to him and

> we deal with it.

> I am going to get Gretchen's book for him when it comes out, I really

think

> it would be great for him to relate to others that go through life with

the

> same challenges as him.

> So, that is some of who we are, and I look forward to talking with all of

> you.

>

August 19, 2002

Leanda, I have never heard of someone developing the very severe neurological problems you have. Hydrocephalus is so rare as an adult, and pseudotumor cerebri is usually caused by medications. But any type of infection can cause pseudotumor cerebri. I know that it can be very severe and serious, and treatment is supportive, but in most cases the etiology is unknown. However, the prognosis is usually for a spontaneous recovery, although that doesn't make you feel better because when will this spontaneous recovery occur? I would not be suprised if the above could be linked to implants. Nothing suprises me anymore in regards to implants and what they can do to our bodies and how they destroy them. Of course finding a doc that will admit that your neurological problems could be related to implants will be next to impossible. But they are out there. As for the other health problems, there have been recent posts about women developing or having heart murmurs, palpitations, fatigue, etc after implant placement. The other autoimmune diseases are very common amongst us. I developed heart problems after implants, and found myself emergently needing open heart surgery. Luckily, I had a great team of docs who do believe in implant illnessess. My docs included a rheumy, a cardiac surgeon, a neurosurgeon, and a neurologist. When I first presented with my health problems to my rheumy, he told me immediately that my health problems were implant related, and he strongly recommended me getting them out. I had to convince my cardiac surgeon, as well as the neurosurgeon and neurologist. But the more bizarre my symptoms and health problems got, the more convinced they became. I presented them all with research articles about the dangers of implants, and that encouraged them to do their own research. Needless to say, they all came to the same conclusion---my implants were at the root of all my health problems. Their belief in this was even more solidified when I started getting better after explant. Today, I feel the best I've felt in yrs, and the docs see it. Do your research and read our stories. Then seriously about getting your implants removed so that you can begin to heal. Please feel free to ask us any questions you may have. We've been there..... e ----- Original Message ----- From: leanda Sent: Sunday, August 18, 2002 6:18 AM Subject: New to the group Hello everyone, I just recently joined and wanted to say 'hi'. Also your input would be greatly appreciated if you have any comments about my situation. I got silicone implants in 1991. Shortly after that, it was announced that they are not safe. Following after that there seemed to be a controversy and I was so busy with my job, I really didn't pay this too much attention. In 1994, I felt the devil might have paid me a personal visit. I was only 35. In 94, I came down with some very strange neuro stuff. Just out of no where, I got hydrocephalus along with Pseudotumor cerebrai. To make a very long story short, since then I have had 4 surgeries, 3 of them in my head to place shunts. That year I found out that I also had a bone marrow disorder which causes me to make too many platelets. I now have to take meds for the rest of my life with constant blood tests to keep checking the blood levels. A year later, I came down with Melanoma. In 2000, symptoms continued and that is when I had to do 2 more brain surgeries. I am now in permanent disability. Also, I can hardly walk from the pain in my ankles and basically all of my joints. Also I have tested positive for an auto-immune disorder but they haven't put a name on it like Lupus for example. Some of the other smaller things that are going on lately is heart arrhythmia, heart murmur I had from much younger, high blood pressure (I've always had very low), low thyroid, fibromyalgea and a fatigue feeling that is too extreme to express. It just donned on me the other day that maybe my implants have contributed to my whole system going 'hey-wire"! I have had them now for 11 years. Also I just recently read some of the dangers with them and I started crying with the idea that perhaps they contributed to all of my health issues. What do you guys think? Also, I get on the side of each of my breasts some red spots that almost look like red stretch marks. The thing is, the markings aren't there all the time so I know they are not stretch marks. My doc told me to just put a topical cream on it. Why am I getting that? I also have a constant rash around my cheeks and I hardly wear make-up, maybe once a week. At this point, just the thought that the implants may have contributed to this, makes me want to take them out. I'm going to do just that. I don't feel like another surgery but that's all I can do. Also I keep getting pains around me liver area which is scaring me a bit. Please let me know what you guys think. Your input is appreciated it. By the way, is there anyone out there who has experienced some of the neuro stuff that's happened to me? Share-share... Thanks for listening, Leanda

August 19, 2002

Hi Leanda,

Welcome to our group. It sounds like you have been through quite a bit! Although I have not heard of anyone yet on our group who has been through brain surgeries, I can tell you that practically all of us have had brain fog, memory problems, and other neurological deficiencies of some kind or another, including vertigo and dizziness. Neurological problems are CLASSIC among implant victims. Additionally, in May of 2001, a report came out of the NIH (National Institute of Health) in Washington DC that showed higher rates of brain cancer among implanted women. That was quite alarming.

In regards to your other symptoms, I would say these are also pretty typical....the joint pain, the fatigue, the low thyroid, the fibromyalgia, all of it sounds so familiar! If you ask what I think, well, sadly, it sounds like you are one more tragic story of the effect implants have had on women.

This controversy about the autoimmune disease connection started up for a reason, (because women are getting ill) and then DOW had to start backpedalling very fast. They did their best to create confusion and cover their behinds. The controversy is why they can't put a name on your illness! Our illnesses don't fit neatly into any one category of autoimmune diseases, but rather is a constellation of symptoms that are common to many autoimmune conditions, so they don't know what to call it yet, and truthfully, they would much rather call it "It's all in your head" syndrome, so they won't have to be held accountable for the millions that have been harmed.

You are smart to be thinking about having surgery to remove the implants. It is the one major thing you can do to start regaining your health. It won't be an easy journey, but it will be a necessary one for you.

I hope we can help you more through this ordeal--have you started looking for a qualified surgeon to remove the implants? Don't go to just anyone--the surgeon who removes the implants must be careful to remove all traces of the implants...the implants, the scar tissues, any material floating around in there that is foreign...it all has to go. Trust me--there are doctors out there who won't give a hoot if they get it all or not, and are very cavalier about it. Go to someone who KNOWS what they are doing. We've got a list of trustworthy doctors if you need help finding one.

Take care and let us know how we can help!

Patty

----- Original Message -----

From: leanda

Sent: Sunday, August 18, 2002 6:20 AM

Subject: New to the group

Hello everyone,

I just recently joined and wanted to say 'hi'. Also your input would be greatly appreciated if you have any comments about my situation.

I got silicone implants in 1991. Shortly after that, it was announced that they are not safe. Following after that there seemed to be a controversy and I was so busy with my job, I really didn't pay this too much attention.

In 1994, I felt the devil might have paid me a personal visit. I was only 35. In 94, I came down with some very strange neuro stuff. Just out of no where, I got hydrocephalus along with Pseudotumor cerebrai. To make a very long story short, since then I have had 4 surgeries, 3 of them in my head to place shunts.

That year I found out that I also had a bone marrow disorder which causes me to make too many platelets. I now have to take meds for the rest of my life with constant blood tests to keep checking the blood levels.

A year later, I came down with Melanoma. In 2000, symptoms continued and that is when I had to do 2 more brain surgeries.

I am now in permanent disability. Also, I can hardly walk from the pain in my ankles and basically all of my joints. Also I have tested positive for an auto-immune disorder but they haven't put a name on it like Lupus for example.

Some of the other smaller things that are going on lately is heart arrhythmia, heart murmur I had from much younger, high blood pressure (I've always had very low), low thyroid, fibromyalgea and a fatigue feeling that is too extreme to express.

It just donned on me the other day that maybe my implants have contributed to my whole system going 'hey-wire"! I have had them now for 11 years. Also I just recently read some of the dangers with them and I started crying with the idea that perhaps they contributed to all of my health issues. What do you guys think?

Also, I get on the side of each of my breasts some red spots that almost look like red stretch marks. The thing is, the markings aren't there all the time so I know they are not stretch marks. My doc told me to just put a topical cream on it. Why am I getting that? I also have a constant rash around my cheeks and I hardly wear make-up, maybe once a week.

At this point, just the thought that the implants may have contributed to this, makes me want to take them out. I'm going to do just that. I don't feel like another surgery but that's all I can do. Also I keep getting pains around me liver area which is scaring me a bit.

Please let me know what you guys think. Your input is appreciated it. By the way, is there anyone out there who has experienced some of the neuro stuff that's happened to me? Share-share...

Thanks for listening,

Leanda

August 20, 2002

Hi Leanda,

(Hi Patty,)

(Thanks for taking the time to write.)

Welcome to our group. It sounds like you have been through quite a bit! Although I have not heard of anyone yet on our group who has been through brain surgeries, I can tell you that practically all of us have had brain fog, memory problems, and other neurological deficiencies of some kind or another, including vertigo and dizziness. Neurological problems are CLASSIC among implant victims. Additionally, in May of 2001, a report came out of the NIH (National Institute of Health) in Washington DC that showed higher rates of brain cancer among implanted women. That was quite alarming.

(That's a little scary about the brain cancer. It sure makes you wonder...)

In regards to your other symptoms, I would say these are also pretty typical....the joint pain, the fatigue, the low thyroid, the fibromyalgia, all of it sounds so familiar! If you ask what I think, well, sadly, it sounds like you are one more tragic story of the effect implants have had on women.

This controversy about the autoimmune disease connection started up for a reason, (because women are getting ill) and then DOW had to start backpedalling very fast. They did their best to create confusion and cover their behinds. The controversy is why they can't put a name on your illness! Our illnesses don't fit neatly into any one category of autoimmune diseases, but rather is a constellation of symptoms that are common to many autoimmune conditions, so they don't know what to call it yet, and truthfully, they would much rather call it "It's all in your head" syndrome, so they won't have to be held accountable for the millions that have been harmed.

(Patty, I wanted to ask you on this subject of autoimmune, I have tested positive but they haven't put a name on it, like lupus for example. Is that what you're talking about?)

You are smart to be thinking about having surgery to remove the implants. It is the one major thing you can do to start regaining your health. It won't be an easy journey, but it will be a necessary one for you.

(In order to be fair with my body and all the problems I have had, suspecting the implants may have caused some of this to happen to me, makes me anxious to have them removed)

I hope we can help you more through this ordeal--have you started looking for a qualified surgeon to remove the implants? Don't go to just anyone--the surgeon who removes the implants must be careful to remove all traces of the implants...the implants, the scar tissues, any material floating around in there that is foreign...it all has to go. Trust me--there are doctors out there who won't give a hoot if they get it all or not, and are very cavalier about it. Go to someone who KNOWS what they are doing. We've got a list of trustworthy doctors if you need help finding one.

(Someone from this site had shared with me some referals of good docs in my area. I'm in Orange County, CA or close to Los Angeles. I want someone who understands how to safely take them out.)

Take care and let us know how we can help!

Patty

(Patty, thanks again, I appreciate your input. I'll keep you guys posted. Life is fun, isn't it......grrrrrgrrrrrr.)

(Have a super day!!)

(Leanda)