My Introduction

September 20, 2005

Wow I am sitting here reading this thinking, Did I write this? You

are not the only one who has these symptoms. I have all of the

sensory things you described, it would have been considered sensory

integration disorder if they knew what to call it when I was

younger. Luckily for me I am divorced, only have 2 kids (in school

all day), and work from home, so the things that bother me are not

so constant. Also, with enzymes and some supplements, hardly

anything bothers me anymore.

For me these symptoms were a function of mercury toxicity. Besides

vaccines, mercurochrome, tuna, and contact lens chemical exposures

as a kid, I also ate the inside of a mercury thermometer that broke

in our bathroom when I was 8 or so. So my exposure was pretty

significant. I have gotten a lot of information on the things that

have helped both me and my kids from this group. I would really

recommend the books " Enzymes for Autism " by DeFelice, " The Out

of Sync Child " (my dsl isn't working so I can't find the author for

you, but it's on Amazon) and " Amalgam Illness " by Hall

Cutler. Having information about what the problem is is very

helpful. You can get a ton of info. from Dana's site also:

http://www.danasview.net

The things that helped me, in no particular order, were: removing

gluten, phenols, artificial ingredients of any sort, caffeine, and

pretty much anything else that could cause problems (I mainly eat

apples, bananas, kefir, popcorn, chicken, vegetables, bacon and

eggs); taking Nystatin and grapefruit seed extract for about 6

months for a huge yeast problem that I didn't even know I had;

taking No Fenol throughout the day for phenols and yeast

maintenance; taking olive leaf extract, oil of oregano, and

glutamine every day; supplementing with biotin, zinc, molybedum,

manganese and black cohosh, when my hair falls out or in general my

copper gets too high; and avoiding a lot of noise and chaos, as much

as possible, when I am full of yeast or otherwise chemically off.

You will get a lot of information here. I'm sorry you are dealing

with all this but it's very possible for things to improve. And

there are a few perks to this, like I can smell a virus on my kids

at least 10 days before they get sick, or if I'm in someone's home

where the dog has a bacteria problem I can alert them because I can

smell that too (I am not kidding about those things as you probably

know). Welcome to the group

Amy

September 21, 2005

Dear a,

My heart goes to you and this is a very short response because I have to run.

It is quite possible that you are on the spectrum of autism without a proper

diagnosis. Your sensitivities are very severe. I have some of them mildly and

I know I have Asperger Syndrome (semi Recovered). Also all these sensitivities

are consist ant with mercury poisoning which is the leading cause of autism,

autoimmune disorders and all kinds of allergies.

I will write you more this weekend because I think there are ways that you can

get help and learn to help yourself.

Sorry for this short note. More later

Haleh

--- a Vivona <pauliegirl1@...> wrote:

> I am going to try to get through this intro the best I can. I am

> going through an all time low right now and I am desperate for some

> relief. Pleas bear with me as some of this may sound insane.

>

> My name is a Vivona and I am 35 y.o. I have 5 children who I am

> homeschooling now. Their ages are 16, 15, 14, 13 & 12. I have had

> emotional problems as far back as I can remember. I have been to

> countless doctors and psychiatrists and I have been diagnosed with

> bi-polar, depression, ADD, BPD, anxiety, and the list goes on. I

> have had problems with sensitivity issues ever since I can

> remember. I hate to be touched, I hate certain noises, I can smell

> things from a mile away. I have allergic reactions to almost

> everything. I have always had problems with my digestive system and

> when I was younger, I had severe problems with constipation. I

> would not go for an entire month. I have tried everything under the

> sun and my problems seem to be getting worse. I am constantly

> irritated and if my husband even breathes near me, I feel like

> ripping his head off. I notice everything more than anyone else. I

> hate the sound of the dogs toenails clicking across the kitchen

> floor, or when he drinks water I feel like I am going to go insane.

> I hate the sound of people eating or sniffing. I hate the sound of

> the computer mouse clicking or of someone tapping something. When

> someone slurps on their drink, I could go through the roof. I also

> don't like to be lightly touched or held too tightly. Sometimes I

> can't even stand the hair on my head or even my own skin. I can

> smell things that my husband swears he doesn't. I hate the feeling

> of any clothes except cotton. I am extremely jumpy and loud sounds

> make my heart pound really fast. I feel like my skin is crawly and

> itchy sometimes. I can even sense when the weather is going to get

> bad because I get very depressed and I feel heavy for some reason.

> This may all sound weird and no one seems to understand it. My poor

> husband and children want to get near to me and I just can't. I

> love them so much, but I feel like something is stopping me from

> getting too close. Sometimes I start to hug my husband and his

> breathing on my neck will make me crazy.

>

> I have tried so many diets and supplements and nothing seems to

> work. There are certain B vitamins that make me feel like I am

> totally losing my grip on reality. I have been losing weight and my

> hair is starting to fall out. I know I need vitamins, but I react

> so poorly to almost all of them. I have taken all wheat and gluten

> from my diet as well as dairy. I was eating an all raw diet and I

> felt much calmer, but after two months I started to feel tired and

> run down. I bought a protein mix and it freaks me out. I am ready

> to stop eating all together. I have no idea where to start. This

> is consuming my life and I am neglecting my family and school

> because of it. I am so tired of spending money on something that

> doesn't work. I think I am even more tired of being full of hope

> that something may work; and it turns out to be a failure. That

> hurts so badly.

>

> Thanks for listening,

> a

>

September 23, 2005

>>I have allergic reactions to almost

> everything. I have always had problems with my digestive system

I use HNI enzymes for these symptoms. There are still foods I need to

avoid, but the enzymes work great for most things

http://www.houstonni.com/

> when I was younger, I had severe problems with constipation.

Constipation ideas. I use magnesium for my own constipation issues

http://www.danasview.net/constip.htm

>>I notice everything more than anyone else. I

> hate the sound

Around my family, sound sensitivity usually coincides with yeast

overgrowth issues

http://www.danasview.net/yeast.htm

>>I can even sense when the weather is going to get

> bad because I get very depressed and I feel heavy for some reason.

Enzymes eliminated most of this problem for me.

> I have tried so many diets and supplements and nothing seems to

> work. There are certain B vitamins that make me feel like I am

> totally losing my grip on reality.

Many supplements cause problems for me also, including constipation.

For my family tho, constipation from supplements meant we were

deficient in that supplement, and our bodies were pulling magnesium to

help absorb and utilize the supplement.

If I take too much B vitamins, I get narcoleptic. I have even fallen

asleep while driving, very scary. But taking low doses of the B

vitamins has been okay, and has helped me [along with the enzymes]

with many of my food issues.

>>I have been losing weight and my

> hair is starting to fall out.

Hair falling out can be biotin deficiency. Biotin is a B vitamin, so

start at a lower dose. And it causes major constipation at first, if

you are very deficient, so be sure to take lots of magnesium with it.

Most biotin deficiency is caused by lack of good bacteria in the gut.

You can take probiotics for that, which will also help with any yeast

issues.

>>I know I need vitamins, but I react

> so poorly to almost all of them.

I have to take all vitamins with No-Fenol enzyme, but I still need to

start at very low dose and work up.

>>I think I am even more tired of being full of hope

> that something may work; and it turns out to be a failure. That

> hurts so badly.

Yep, I have been there also. It took me a lot of experimentation, but

I did eventually find what seems to work for me. Hopefully you will

find what helps you.

I would start with the HNI enzymes. The No-Fenol has been wonderful

for me.

Good luck.

Dana

September 27, 2005

Have you tried enzymes and probiotics?

My introduction

I am going to try to get through this intro the best I can. I am

going through an all time low right now and I am desperate for some

relief. Pleas bear with me as some of this may sound insane.

My name is a Vivona and I am 35 y.o. I have 5 children who I am

homeschooling now. Their ages are 16, 15, 14, 13 & 12. I have had

emotional problems as far back as I can remember. I have been to

countless doctors and psychiatrists and I have been diagnosed with

bi-polar, depression, ADD, BPD, anxiety, and the list goes on. I

have had problems with sensitivity issues ever since I can

remember. I hate to be touched, I hate certain noises, I can smell

things from a mile away. I have allergic reactions to almost

everything. I have always had problems with my digestive system and

when I was younger, I had severe problems with constipation. I

would not go for an entire month. I have tried everything under the

sun and my problems seem to be getting worse. I am constantly

irritated and if my husband even breathes near me, I feel like

ripping his head off. I notice everything more than anyone else. I

hate the sound of the dogs toenails clicking across the kitchen

floor, or when he drinks water I feel like I am going to go insane.

I hate the sound of people eating or sniffing. I hate the sound of

the computer mouse clicking or of someone tapping something. When

someone slurps on their drink, I could go through the roof. I also

don't like to be lightly touched or held too tightly. Sometimes I

can't even stand the hair on my head or even my own skin. I can

smell things that my husband swears he doesn't. I hate the feeling

of any clothes except cotton. I am extremely jumpy and loud sounds

make my heart pound really fast. I feel like my skin is crawly and

itchy sometimes. I can even sense when the weather is going to get

bad because I get very depressed and I feel heavy for some reason.

This may all sound weird and no one seems to understand it. My poor

husband and children want to get near to me and I just can't. I

love them so much, but I feel like something is stopping me from

getting too close. Sometimes I start to hug my husband and his

breathing on my neck will make me crazy.

I have tried so many diets and supplements and nothing seems to

work. There are certain B vitamins that make me feel like I am

totally losing my grip on reality. I have been losing weight and my

hair is starting to fall out. I know I need vitamins, but I react

so poorly to almost all of them. I have taken all wheat and gluten

from my diet as well as dairy. I was eating an all raw diet and I

felt much calmer, but after two months I started to feel tired and

run down. I bought a protein mix and it freaks me out. I am ready

to stop eating all together. I have no idea where to start. This

is consuming my life and I am neglecting my family and school

because of it. I am so tired of spending money on something that

doesn't work. I think I am even more tired of being full of hope

that something may work; and it turns out to be a failure. That

hurts so badly.

Thanks for listening,

a

January 15, 2007

welcome Katy I am so sorry that you are going through what all of us with lyme's

have gone through and are going through in this group there is tons of

infromation that could be use for school and a nurse would be well advise to

look for.

there are many neat ladies here with lots of information that can help you

GOD BLESS BUD

laplaca <laplacak@...> wrote:

My name is Katy and I live in New Jersey. I am 16 years old and I am a

junior. I got Mono during my sophomore year. Before the doctors knew what was

wrong with me I was put on antidepressants, but I felt like something else was

wrong. I struggled to finish school and by the end of summer I was done. I kept

telling myself my junior year was going to be better. I never felt better and I

was constantly tired. I would come home from school and sleep. I was crying a

lot as well. By October I went to the doctor’s and he took my blood. I told him

I heard screaming in my head and he said that was associated with

hallucinations. I started crying, thinking I was crazy. When I went back to

school I was very upset and I ending up crying to the nurse, and everybody began

thinking I was having mental issues. However, by the next week my doctor called

to tell me I had Lyme disease. I had mixed emotions. I was relieved to know that

my mental issues were associated with my illness.

Many symptoms I was experiencing I would put aside figuring they were nothing.

Now I have a Lyme disease doctor and when she started asking me questions, it

was hard to remember some of my symptoms. When I found out the common symptoms

of Lyme disease I could not believe how many things I already experienced.

Already I have gotten a MRI and a spec scan. My results are back and due to some

abnormalities I qualify to begin medication on Tuesday, January 16th. I hope to

get better soon so I can return to a normal life. I know that during the IVs

some of my symptoms will increase and I may feel worse. I am scared, because

this is all new to me. I feel I have Lyme disease for a reason and once I am

better I will do what I can to help with Lyme disease awareness. I am a Girl

Scout and for my gold award I would like to do something associated with Lyme

disease. If anyone has suggestions email them to me. I would like to make a

change and do whatever I can to make a difference. Through my doctor visits I

have learned many people are unaware of Lyme disease. My school is just one

example. My Nurse keeps bugging my doctor and asking me to return to school. I

have received very little help from my school guidance counselor. It is too much

for me to get up for school in the morning.

Some days I wake up a new symptom occurs, and I never know what the next day

holds.

-Katy

---------------------------------

Need Mail bonding?

Go to the Q & A for great tips from Answers users.

January 15, 2007

Welcome, Katy, you have joined a very compassionate group. You have your

youth on your side, so that should help you defeat this thing. Some of

us have had Lyme for many years. It's wonderful that you want to do

something about Lyme awareness. Go to your local newspaper and tell them

your story. Find a local support group, there are many. How is your mom

handling your illness?

Good luck and God bless!

Debbie

January 15, 2007

Hi Katy,

I am glad you're dr. suspected Lyme and tested you. Even more so

that it came back positive for you. It doesn't for a lot of people

who actually have it and that leads to years of suffering.

I like your attitude about the treatment and dealing with it. I

think it's great that you want to do your part in promoting Lyme

awareness!

jan

>

> My name is Katy and I live in New Jersey. I am 16 years old

and I am a junior. I got Mono during my sophomore year. Before the

doctors knew what was wrong with me I was put on antidepressants, but

I felt like something else was wrong. I struggled to finish school

and by the end of summer I was done. I kept telling myself my junior

year was going to be better. I never felt better and I was constantly

tired. I would come home from school and sleep. I was crying a lot as

well. By October I went to the doctor's and he took my blood. I told

him I heard screaming in my head and he said that was associated with

hallucinations. I started crying, thinking I was crazy. When I went

back to school I was very upset and I ending up crying to the nurse,

and everybody began thinking I was having mental issues. However, by

the next week my doctor called to tell me I had Lyme disease. I had

mixed emotions. I was relieved to know that my mental issues were

associated with my illness.

> Many symptoms I was experiencing I would put aside figuring they

were nothing. Now I have a Lyme disease doctor and when she started

asking me questions, it was hard to remember some of my symptoms.

When I found out the common symptoms of Lyme disease I could not

believe how many things I already experienced.

> Already I have gotten a MRI and a spec scan. My results are

back and due to some abnormalities I qualify to begin medication on

Tuesday, January 16th. I hope to get better soon so I can return to a

normal life. I know that during the IVs some of my symptoms will

increase and I may feel worse. I am scared, because this is all new

to me. I feel I have Lyme disease for a reason and once I am better I

will do what I can to help with Lyme disease awareness. I am a Girl

Scout and for my gold award I would like to do something associated

with Lyme disease. If anyone has suggestions email them to me. I

would like to make a change and do whatever I can to make a

difference. Through my doctor visits I have learned many people are

unaware of Lyme disease. My school is just one example. My Nurse

keeps bugging my doctor and asking me to return to school. I have

received very little help from my school guidance counselor. It is

too much for me to get up for school in the morning.

> Some days I wake up a new symptom occurs, and I never know what

the next day holds.

>

> -Katy

January 16, 2007

Dear Katy--My heart goes out to you. My 15 year old

daughter has Lyme, and I have an idea of what you've

been going through. There is a weekly Lyme teen chat

room that she participates in and likes a lot. If you

want info about joining that, send me a private

message at jblral@... and I'll get you the

information.

I've also been a Girl Scout leader, so I know about

the Gold Award. I think if you could do an educational

project to help inform Girl Scouts themselves about

Lyme and other tick-borne illnesses, that would be a

good thing. Scouts are at high risk for this when they

go out camping, hiking, etc. Also, some kind of

educational project aimed at elementary schools would

be good. There are Lyme organizations in your area you

could partner with.

But I would also urge you not to stress about the Gold

Award right now. You need to concentrate on getting

healthy! And remember this: as crummy as it is to have

Lyme, it's much worse to have it and not know you have

it. With a proper diagnose you can start getting well.

Best of luck to you,

Dorothy

January 16, 2007

>

> My name is Katy and I live in New Jersey. I am 16 years old and

I am a junior. I got Mono during my sophomore year. Before the doctors

knew what was wrong with me I was put on antidepressants, but I felt

like something else was wrong. I struggled to finish school and by the

end of summer I was done. I kept telling myself my junior year was

going to be better. I never felt better and I was constantly tired. I

would come home from school and sleep. I was crying a lot as well. By

October I went to the doctor's and he took my blood. I told him I

heard screaming in my head and he said that was associated with

hallucinations. I started crying, thinking I was crazy. When I went

back to school I was very upset and I ending up crying to the nurse,

and everybody began thinking I was having mental issues. However, by

the next week my doctor called to tell me I had Lyme disease. I had

mixed emotions. I was relieved to know that my mental issues were

associated with my illness.

> Many symptoms I was experiencing I would put aside figuring they

were nothing. Now I have a Lyme disease doctor and when she started

asking me questions, it was hard to remember some of my symptoms. When

I found out the common symptoms of Lyme disease I could not believe

how many things I already experienced.

> Already I have gotten a MRI and a spec scan. My results are

back and due to some abnormalities I qualify to begin medication on

Tuesday, January 16th. I hope to get better soon so I can return to a

normal life. I know that during the IVs some of my symptoms will

increase and I may feel worse. I am scared, because this is all new to

me. I feel I have Lyme disease for a reason and once I am better I

will do what I can to help with Lyme disease awareness. I am a Girl

Scout and for my gold award I would like to do something associated

with Lyme disease. If anyone has suggestions email them to me. I would

like to make a change and do whatever I can to make a difference.

Through my doctor visits I have learned many people are unaware of

Lyme disease. My school is just one example. My Nurse keeps bugging my

doctor and asking me to return to school. I have received very little

help from my school guidance counselor. It is too much for me to get

up for school in the morning.

> Some days I wake up a new symptom occurs, and I never know what the

next day holds.

>

> -Katy

>

> ---------------------------------

> Need Mail bonding?

> Go to the Q & A for great tips from Answers users.

>

September 7, 2007

Welcome to a great group.

First of all, you are lucky to have people thinking about apraxia in

relation to your son. It might be easier to wrap their heads around

b/c there has been an acute brain injury to point to.

We have been in the Early Intervention system since day one - great

support but not always the best speech therapists (my experience).

The thing that helped my son the most:

good speech therapist who gave him the tools to communicate via

pointing to pictures

Nordic Naturals Complete Omega 3-6-9 (after 6 weeks he could finally

sign at 5 years old)

Vitamin E (he finally talked -again- at 5.5 years after six weeks of

E - 200 iu for a few weeks then 400 iu now 800iu)

a good speech therapist that showed him how to take the sounds he had

a morph them into spoken language.

brushing protocol to help him calm and organize

most importantly -

love

he knew that those special speech therapists loved him and were not

annoyed that they could not get him to hit the goals on his IEP.

I'm very curious to see what others will report.

luck and love,

>

> Hi, I am a new member to this group and am desperately seeking your

advice.

> My son, now 2 yrs, 10 mos of age, suffered a brain injury at 8

days of age. (acute, moderate, hypoxic ischemic brain injury) and has

been diagnosed with cerebral palsy (mild), epilepsy, and

periventricular leukomalacia (PVL). He is doing remarkably well in

many areas of physical therapy and has made many steady strides.

>

> However, we have dealt with several oral/motor delays. We just

got settled with a speech therapist and she saw I had a children's

DHA softgel by Nordic Naturals and asked me if I had read the book

The Late Talker. I told her no and had never heard of this site. I

just thought I would try the DHA as I read that a study showed that

many children in status elipticus (state of constant seizing) were

DHA deficient. Therefore, I was using it for seizure reduction.

>

> Therapists have been bouncing around the phrase " Oral apraxia "

and I am anxious to get this book by to read.

>

> Could you share with me what you have done to stimulate your

child's speech that has been the most effective? Whatever you feel

made some strides. I am just seeking suggestions on anything. What is

your dosage and type of supplementation you have chosen for your

child and why?

>

> Thank you again for taking the time to respond to my post.

>

> Sincerely,

> Roark

>

> ---------------------------------

> Building a website is a piece of cake.

> Small Business gives you all the tools to get online.

>

February 8, 2008

Hi, are you Lynne Guimond little sister. I am her good friend, Dolores. She

renamed me Dodo and now everyone calls me Dodo. Well, welcome to the club. R U

the one who lives in Quebec or the one who lives in the Yukon? I have so many

questions. I am nosy and any sister of Lynne's is a sister of mine. I love that

Lady. You know, it was she who introduced me to Minocin and it saved my life.

I was bedridden for a long time and now I can't keep my derrier sp? (butt) in

one place. I want to welcome you to the group and learn more about you. If you

are a different Lynne's sister, I welcome you any way. I have Scleroderma! Was

dx in 2005, but was sick a whole lot longer than that and according to my doc's

was preparing to meet my maker soon. However, with Lynne's rescue, I have been

able to prove them all wrong and now, I am so busy. I am even in the midst of

writing a book, But first I must get thru the 250+ e:mails I came home to. I

was away for 10 days and the

mail piled up. Went to Florida to pick up my R/V which was in storage.

Enjoyed the warm weather. Got in late last night and the temperature dropped 20

degrees within an hour. Brrrrrrr! I live in NYC and have visited your sister

Lynne in Ontario. She met me in Montreal. Had a great time with her and

Santos. My hubby and I got along great with them. It was a short visit, but we

clicked immediately and have been close e:friends ever since. Please write back

and tell us more. My private e:mail is martysfolks2004@.... Talk to you

soon, I hope. Let us know!~~~~~Take care~~~~Love, Dolores AKA Dodo & Mike

sugui_mo <sugui_mo@...> wrote: Hi all; Just wanted to introduce

myself, Suzanne, Lynne's little sis.

Don't have any hard evidence of what I have but suspect numerous

ailments. Lynne has been coaching me through stuff, so much to learn. I

do find it all very interesting though. Am greatfull to be able to join

up with you. Off to whitehorse for stress test on Monday, a step in the

right direction, Perhaps leeps and bounds in the near future. Lynne. I

made contact and got much info from another recovering SD'er living in

whtrs. Have a name in order to have hair test done among other good

info. Will catch up with you if I survive the tread mill. Suzanne

---------------------------------

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February 8, 2008

Hi Dodo,Sue is my litytle sister.We thought she had Lupus and for a time she was

doing fairly well.Since then things have taken a nose dive and it is beginning

to look like she might have MCTD or ,God forbid,SD.I told her about Dr. Blaney

in Vancouver and it would take her at least 5-6 days to drive there from the

Yukon.She has been having heart palpitations and other weird things that SDers

get.She drove down to Whitehorse for testing and I have not heard anything

since.Mind you I have been computerless for too many days.By the way,do you know

any good doctor in Long Island? My aunt has Just been told she has RA.Great

family,no? Lynne

Re: rheumatic My introduction

Hi, are you Lynne Guimond little sister. I am her good friend, Dolores. She

renamed me Dodo and now everyone calls me Dodo. Well, welcome to the club. R U

the one who lives in Quebec or the one who lives in the Yukon? I have so many

questions. I am nosy and any sister of Lynne's is a sister of mine. I love that

Lady. You know, it was she who introduced me to Minocin and it saved my life. I

was bedridden for a long time and now I can't keep my derrier sp? (butt) in one

place. I want to welcome you to the group and learn more about you. If you are a

different Lynne's sister, I welcome you any way. I have Scleroderma! Was dx in

2005, but was sick a whole lot longer than that and according to my doc's was

preparing to meet my maker soon. However, with Lynne's rescue, I have been able

to prove them all wrong and now, I am so busy. I am even in the midst of writing

a book, But first I must get thru the 250+ e:mails I came home to. I was away

for 10 ! days and the

mail piled up. Went to Florida to pick up my R/V which was in storage. Enjoyed

the warm weather. Got in late last night and the temperature dropped 20 degrees

within an hour. Brrrrrrr! I live in NYC and have visited your sister Lynne in

Ontario. She met me in Montreal. Had a great time with her and Santos. My hubby

and I got along great with them. It was a short visit, but we clicked

immediately and have been close e:friends ever since. Please write back and tell

us more. My private e:mail is martysfolks2004@.... Talk to you soon, I

hope. Let us know!~~~~~Take care~~~~Love, Dolores AKA Dodo & Mike

February 15, 2008

> Does anyone have any information that may be helpful to me.I am so

> desperate at this point,that i have signed up for clinical trials for

> RA..>>>>>

>

This must be incredibly frusratating.

it hurts just to read your letter.

First of all, the prednisone does not help you.

This tells the doctors your pain is not the result of inflammation (RA).

THAT is why I suspect they think you do not have RA.

Secondly, your primary care doctor has not referred you to a rheumy?

You need to see one and you need a good pain management specialist..

Let us know,

Pris

**************

The year's hottest artists on the red carpet at the Grammy

Awards. Go to AOL Music.

(http://music.aol.com/grammys?NCID=aolcmp00300000002565)

February 15, 2008

>

> I am new to this groupand new to the effects of RA,but no stanger to

> the pain.

> I have 3 different diagnosis from 3 different drs.

> One says it is bursitis

> Another says degenerative Joint disease

> Yesterday, i have RA

>

Dear Friend, my heart goes out to you. So many of us have been in your

shoes. Not just with the miserable pain, but particularly with the

frustration of doctors. I have been " treated " by many doctors over the

years and sometimes " mis-treated " . Rheumatologists seem to be a breed

of their own and have found them to be discompassionate often. There

isn't much they have to offer us pharmaceutically and we have a

frustrating disease. Personally I wish more research was being done

with the connection to hormones. My sister and I both began having

symptoms after the birth of our children. Fast forward 25 years the

joint deformity, lack of function and pain as you describe it prevail.

God Bless you, hang in there, keep us posted

Suz

February 15, 2008

>

> I am new to this groupand new to the effects of RA,but no stanger

to

> the pain.

> I have 3 different diagnosis from 3 different drs.

> One says it is bursitis

> Another says degenerative Joint disease

> Yesterday, i have RA

> i have had aches and pains from an injury to my shoulder in

2002,so i

> know pain;but i can tell you that it is NOTHING compared to the

pain i

> feel everyday.I have told the drs i prefer to have twins than to

have

> this sort of pain.

> It really started bad in nov 07.I woke up one morning, i could not

move

> my right arm,could not lift it,couldnt move my hand,etc

> fingers, ...nothing.that was the first dr i saw that said

bursitis,gave

> me a shot in the hip and some pain pills.

> all of these aches and pains were constant,no relief;with an

exception

> of a couple of days.When i resumed my normal household duties,such

as

> washing dishes,here it came again.so i go see the family dr and i

am

> given predisone and cataflan.no help whatsoever.i was out of work

from

> the first drs visit,and when i return to work with a drs excuse i

get

> layed off from my job,and i am still layed off.

> all of this week both of my hands,fingers,knuckles are swollen i

cant

> move them.My left shoulder is killing me,burning and numbed from

the

> top of the shoulder to my fingertips,the back of my right thigh is

> swollen and so is both of my ankles and the side of my right foor

feels

> swollen,i am limping.i call the dr and i get no results as he says

the

> cataflan and predisone should do it. Meanwhile, i have not slept

in the

> bed for days,exhausted from the pain...

> yesterday, i go to the ER doctor at the local hospital, and he

starts

> shouting at me(i have never seen this dr before in my life)saying

that

> he did not know why i was at the er,as it was not a emergency.He

said

> there is nothing he can do for me,no tests to run,only for me to

go to

> the dr that prescribed predisone and cataflan.I told him i am

> unsatisfied with my treatment and want a referral to a specialist

that

> can confirm what exactly is wrong with me.i was crying by this

time

> because of the terrible pain i was in.I did not want to go to the

er

> because i knew it would be a waste of money,but my husband

insisted;and

> i did want the pain to diappear.

> Does anyone have any information that may be helpful to me.I am so

> desperate at this point,that i have signed up for clinical trials

for

> RA..

>

> Sorry to be so long winded,but i am exhausted,tired and sick of

drs

> that i believe does not care how much a person is suffering.

>

IM SO SORRY FOR YOUR TERRIBLE PAIN & SUFFERING.IVE HAD RA FOR 33YRS. &

YES ITS HARD.I TO WAS MISDIAGNOSED AT THE AGE OF 5YRS.OLD & NOW,I

SUFFER WITH SEVERE RA.I TO TAKE PREDNISONE & HAVE BEEN ON IT FOR

YEARS,ALL IT HAS DONE IS MADE ME WORSE.....YOU BECOME DEPENDANT ON

IT,GAIN WEIGHT,YOUR FACE BECOMES ROUND & MOST OF ALL IT MAKES YOUR

BONES VERY BRITTLE!!!!! IT CAN CAUSE YOU TO GET OSTEOPOROSIS,WHICH I

HAVE TO...SO I ENCOURAGE YOU TO SEE ANOTHER DR.AS SOON AS YOU

CAN..GOOD LUCK & GOD BLESS!!!MELYNDA<MAPGAMEZ@...>WROTE:

February 15, 2008

thank you for your kind words.

It helpsjust reading some of your posts,and knowing that i am not alone.

Does anyone know of a good dr in Georgia?

There seems to be a shortage of them in my area.

God Bless you all

nna

susanraeburdick <susanraeburdick@...> wrote: