New here

[Guest guest]

Tim,

Unfortunately, sometimes it takes a long time to get a firm diagnosis.

Many of these autoimmune diseases have similar symptoms, and it's hard

to sort them out. It also depends on what the blood work shows, but

that is complicated, too. You just have to be patient while the rheumy

does the detective work. I hope you have a good rheumy who will treat

whatever you have aggressively. Did he give you anything for pain to

tide you over until he finds out what you have? Be the squeaky wheel

that gets the grease. It helps to be proactive. Make sure you get a

copy of the lab results. We can help you interpret them. Good luck and

hang in there.

Sue

On Friday, April 7, 2006, at 12:33 PM, stoddardtim wrote:

> i have been having joint pain for about 18 months , started after brain

> surgery, wich i had in may of 04. did not think much about until it got

> so bad i could not take it much more.thought it was do to the meds i

> was on but not so. went to a rheumatologist , still not 100% sure if

> it is ra or maybe lupus i guess, still doing test. how long does this

> take to find out. shoulders hands and feet are the worst.

[Guest guest]

Hi Tim,

I would like to welcome you to the group. I am sorry about your

health problems. Not sure how long it can take to make a diagose.

Just don't give up, Tawny

>

> i have been having joint pain for about 18 months , started after

brain

> surgery, wich i had in may of 04. did not think much about until it

got

> so bad i could not take it much more.thought it was do to the meds i

> was on but not so. went to a rheumatologist , still not 100% sure if

> it is ra or maybe lupus i guess, still doing test. how long does

this

> take to find out. shoulders hands and feet are the worst.

>

> thanks tim

>

[Guest guest]

>

> Hello,

> I'm and I live in Brooklyn.

> I have 2 daughters, (will be 3 in July) and Brigette (just

> turned 15 months).

> About 3 months ago, I started noticing changes in Brigette's

> behavior. She was starting to avoid eye contact and not looking

when

> we called her name. Around 11 or 12 months, she first started

> babbling, but it was very rare. After awhile, she completely

stopped.

> Now she just blows raspberries and moans a lot. She's still not

> walking but she is standing on her own and furniture walking. She

> doesn't really play with toys, she just bangs them against a table

or

> whatever is near. She also likes to hold a toy or a piece of paper

> and shake it, she finds that interesting. When she's holding a

> bottle, she's slapping at it while drinking. She slaps at a lot of

> things. She's into shaking her head 'no' but she's not waving. The

> only thing she imitates is clapping. She does love to be held and

> rocked and will hold her arms out to me to pick her up. She used

to

> get excited when I came into the room and cry when I would leave

but

> she doesn't do that anymore.

> I do have fillings in my mouth that I've had

> since I was a child. I'm wondering if maybe I passed mercury to

her

> during pregnancy. This is something I read about recently doing

> research on the internet. She just had her MMR shot last Saturday

> which now that I know a lot about it, I regret her getting.

> She still smiles and laughs. She loves being tickled and held in

the

> air. I know she doesn't like her sister. has always been

very

> mean to her. When she thought we weren't looking, she would hit,

> push, kick and jerk toys away from Brigette. I can never leave

them

> alone for even a second. Usually when gets close, Brigette

> moves away or puts down the toy she was holding. Is this

> psychological?

> Another thing. Sorry, I know this is long. She was born 4 weeks

> early. She couldn't breath when she was born but they still gave

her

> to me and she stayed with me in recovery for about 45 minutes

until

> my mom noticed she kept making a grunting noise. The nurse took

her,

> checked her chest and immediately took her to NICU. She was in

NICU

> for 11 days on a ventilator. At one time, she extubated herself.

> The hospital never told me if any damage was done. I assumed there

> wasn't since they gave her a brain scan and other tests that I

don't

> really know much about.

> Anyway, we're waiting on a neuro evaluation at the Cleveland

Clinic

> and neuro tests at the University Hospitals, but that is not til

> Sept. I don't think I can handle waiting 4 months to find out

what's

> wrong with my baby. Any suggestions on who else I could try for

neuro

> tests?

> Early intervention specialist is coming next Monday. And the ped

dr.

> ordered a lead, anemia and thyroid blood test.

> What I really want her to have is her heavy metals checked. If my

> doctor won't do it, do you know how I can have this done? She's

still

> real young and I don't know if they will do it at her age.

> Has anyone had this done?

> Well, thank you for reading.

>

>

Hi ,

You have a lot of points here and most are one's that are shared by

many parents of a child with autims including myself.

My first point would be a question. Have you taken Bridgett for any

kind of diagnosis testing/has she been evaluated for autism? If not

try calling the Cleveland Clinic Center for Autism at the Child

Rehab hospital. I know they have worked with at least one girl who

was 18 months old and it is never too soon, you just have to make

sure you go where there is adequate education and experience. The

CCCA can point you to the right people.

Second, do not worry about your fillings unless you are

planning or might have more children. If you are fillings are

easily replaced if it gives you cause for concern. The reason I

tell you not to worry about it is because studies have been done and

show people fall into one of three areas when given a diagnosis of

autism for their child. Getting stuck in the past wondering what

could of, should of, would of happened and it does nothing to help

the matters at hand. The second group works on and lives with the

day to day gains. The third group gets stuck in worrying about the

future. According the the studies the second group had the best

prognosis and so do their children. The whole

amalgum/mercury/fillings/heavy metal debate is something that needs

to be addressed but the scientific community as a whole, no matter

on what side of the argument, believe these things would not be the

cause, but an 'exogenous insult' or something that triggers

something someone was already predisposed for. While this is not

all that comforting it does show that you could not possibly account

for everything even if something were proven to be an outside insult.

Third,the MMR vaccine. There are two ideas in the group that

believe this is one of the outside catalysts. One is it causes a

problem through 'autogenic overload', meaning too many things being

introduced at one time; the M, the M and the R. You can request you

pediatrician give monovalent forms, meaning the M, the M and the R

separatly and spread out. The second argument is the 'thimerisol'

issue. My understanding is that even though thimerisol was taken

out of vaccines it was still in the stockpiles that were still

allowed to be used and that were not exhaused until roughly 2003.

You have more to worry about from a flu vaccine or PPD (?)vaccine

which still contain mercury. There are other things that have to

watched out for such as Rhogam and some other vaccines that now call

mercury an additive instead of a preservative making things a little

muckier. You can always choose to not vaccine due to philosophical

reasons, but talk with a KNOWLEDGABLE pediatrician who has training

with children with developmental disorders. Dr. Wexberg, MD

of the Cleveland Clinic (Beachwood office) is a good choice.

Fourth, about your daughters getting along. Children with

autism spectrum disorder already have and inherant issue with

socialization. If other children give added reason to not

communicate, socialize or reachout our children are getting a double-

whammy and are being pushed further behind the developmental curve.

It would be advisable to get professional help in having your older

child take a positive interest in your younger. Having an older

sibling of the same sex is a phenominal benifit for Bridgett.

Fifth, it is almost erie. My son was given to us and did the

same thing with the grunting and it was found he was not breathing

right and had to be 'bagged' and intubated. He spent 11 days in the

NICU for that and SVT's. He was also about four weeks early due to

HELLP syndrome (an atypical form of preeclampsia). What is

interesting or maybe not is that when there is some neuro/biological

issue with a baby in eutero it is not uncommon for mothers to have

problems during birth. The babies atypical neuro/biological issue

would be the impetus and not the other way around with the atypical

delivery being the cause of a disorder. To alleivate any concerns

talk with your doctor and do some research on your own, but I

already have and have found a lot of data that bears this out.

Next, Dr. DeMio who I tell you about with mixed feelings is

someone who is very familiar with the chemistry of heavy metals and

works in this area being a parent of a child with autism himself and

a past chemistry professor and now a medical doctor. Use a good

pediatrician, like I mentioned above, to filter what someone like

Dr. DeMio tells you, you should do.

Lastly, the fact that you have such a big head start on

whatever the problem might be is to your benefit and credit.

Surround yourself with the right people on behalf of your daughter.

Interview, ask questions and get references. Keep your circle

limited to people who can benefit your family. If you take the

advice from friends, family, stranger, magazines, T.V., the

Internet, etc., etc., etc., including me as you do not know me, you

can drive yourself crazy. Weight everything you hear, pick and

choose, and be choosy about what your are going to do.

P.S. Intervention Specialists come in all flavors too and are

not always the most helpful even if they are coming from a place of

trying to help and should be well informed. You can contact

different parent/autism groups and then try to get under the wing of

someone who has a child with similiar issues as your child and is a

little farther down the same path (and still filter everything

through what's best for your family).

Good luck and God bless,

Shane

[Guest guest]

I still have to get the hang of this site. Somehow after my last

post I ended up on the page with post number one instead of the most

recent and replied to a three year old post...oh, well, better later

than never...

> Hi ,

> You have a lot of points here and most are one's that are shared

by

> many parents of a child with autims including myself.

> My first point would be a question. Have you taken Bridgett for

any

> kind of diagnosis testing/has she been evaluated for autism? If

not

> try calling the Cleveland Clinic Center for Autism at the Child

> Rehab hospital. I know they have worked with at least one girl

who

> was 18 months old and it is never too soon, you just have to make

> sure you go where there is adequate education and experience. The

> CCCA can point you to the right people.

> Second, do not worry about your fillings unless you are

> planning or might have more children. If you are fillings are

> easily replaced if it gives you cause for concern. The reason I

> tell you not to worry about it is because studies have been done

and

> show people fall into one of three areas when given a diagnosis of

> autism for their child. Getting stuck in the past wondering what

> could of, should of, would of happened and it does nothing to help

> the matters at hand. The second group works on and lives with the

> day to day gains. The third group gets stuck in worrying about

the

> future. According the the studies the second group had the best

> prognosis and so do their children. The whole

> amalgum/mercury/fillings/heavy metal debate is something that

needs

> to be addressed but the scientific community as a whole, no matter

> on what side of the argument, believe these things would not be

the

> cause, but an 'exogenous insult' or something that triggers

> something someone was already predisposed for. While this is not

> all that comforting it does show that you could not possibly

account

> for everything even if something were proven to be an outside

insult.

> Third,the MMR vaccine. There are two ideas in the group that

> believe this is one of the outside catalysts. One is it causes a

> problem through 'autogenic overload', meaning too many things

being

> introduced at one time; the M, the M and the R. You can request

you

> pediatrician give monovalent forms, meaning the M, the M and the R

> separatly and spread out. The second argument is the 'thimerisol'

> issue. My understanding is that even though thimerisol was taken

> out of vaccines it was still in the stockpiles that were still

> allowed to be used and that were not exhaused until roughly 2003.

> You have more to worry about from a flu vaccine or PPD (?)vaccine

> which still contain mercury. There are other things that have to

> watched out for such as Rhogam and some other vaccines that now

call

> mercury an additive instead of a preservative making things a

little

> muckier. You can always choose to not vaccine due to

philosophical

> reasons, but talk with a KNOWLEDGABLE pediatrician who has

training

> with children with developmental disorders. Dr. Wexberg,

MD

> of the Cleveland Clinic (Beachwood office) is a good choice.

> Fourth, about your daughters getting along. Children with

> autism spectrum disorder already have and inherant issue with

> socialization. If other children give added reason to not

> communicate, socialize or reachout our children are getting a

double-

> whammy and are being pushed further behind the developmental

curve.

> It would be advisable to get professional help in having your

older

> child take a positive interest in your younger. Having an older

> sibling of the same sex is a phenominal benifit for Bridgett.

> Fifth, it is almost erie. My son was given to us and did the

> same thing with the grunting and it was found he was not breathing

> right and had to be 'bagged' and intubated. He spent 11 days in

the

> NICU for that and SVT's. He was also about four weeks early due

to

> HELLP syndrome (an atypical form of preeclampsia). What is

> interesting or maybe not is that when there is some

neuro/biological

> issue with a baby in eutero it is not uncommon for mothers to have

> problems during birth. The babies atypical neuro/biological issue

> would be the impetus and not the other way around with the

atypical

> delivery being the cause of a disorder. To alleivate any concerns

> talk with your doctor and do some research on your own, but I

> already have and have found a lot of data that bears this out.

> Next, Dr. DeMio who I tell you about with mixed feelings is

> someone who is very familiar with the chemistry of heavy metals

and

> works in this area being a parent of a child with autism himself

and

> a past chemistry professor and now a medical doctor. Use a good

> pediatrician, like I mentioned above, to filter what someone like

> Dr. DeMio tells you, you should do.

> Lastly, the fact that you have such a big head start on

> whatever the problem might be is to your benefit and credit.

> Surround yourself with the right people on behalf of your

daughter.

> Interview, ask questions and get references. Keep your circle

> limited to people who can benefit your family. If you take the

> advice from friends, family, stranger, magazines, T.V., the

> Internet, etc., etc., etc., including me as you do not know me,

you

> can drive yourself crazy. Weight everything you hear, pick and

> choose, and be choosy about what your are going to do.

> P.S. Intervention Specialists come in all flavors too and

are

> not always the most helpful even if they are coming from a place

of

> trying to help and should be well informed. You can contact

> different parent/autism groups and then try to get under the wing

of

> someone who has a child with similiar issues as your child and is

a

> little farther down the same path (and still filter everything

> through what's best for your family).

> Good luck and God bless,

> Shane

>

[Guest guest]

Hi ,

I also live in Brooklyn and my 3 yr. old daughter was diagnosed at

the Cleveland Clinic at 17 months old. We also saw a Neurologist

there at 15 months old.

I have to run to a b-day party in a few, but you are more than

welcome to contact me by email. I know Brooklyn is very small, so we

must be very close to each other!

I have tons of info for you if you want to contact me,

> >

> > Hello,

> > I'm and I live in Brooklyn.

> > I have 2 daughters, (will be 3 in July) and Brigette

(just

> > turned 15 months).

> > About 3 months ago, I started noticing changes in Brigette's

> > behavior. She was starting to avoid eye contact and not looking

> when

> > we called her name. Around 11 or 12 months, she first started

> > babbling, but it was very rare. After awhile, she completely

> stopped.

> > Now she just blows raspberries and moans a lot. She's still not

> > walking but she is standing on her own and furniture walking.

She

> > doesn't really play with toys, she just bangs them against a

table

> or

> > whatever is near. She also likes to hold a toy or a piece of

paper

> > and shake it, she finds that interesting. When she's holding a

> > bottle, she's slapping at it while drinking. She slaps at a lot

of

> > things. She's into shaking her head 'no' but she's not waving.

The

> > only thing she imitates is clapping. She does love to be held

and

> > rocked and will hold her arms out to me to pick her up. She used

> to

> > get excited when I came into the room and cry when I would leave

> but

> > she doesn't do that anymore.

> > I do have fillings in my mouth that I've had

> > since I was a child. I'm wondering if maybe I passed mercury to

> her

> > during pregnancy. This is something I read about recently doing

> > research on the internet. She just had her MMR shot last

Saturday

> > which now that I know a lot about it, I regret her getting.

> > She still smiles and laughs. She loves being tickled and held in

> the

> > air. I know she doesn't like her sister. has always been

> very

> > mean to her. When she thought we weren't looking, she would hit,

> > push, kick and jerk toys away from Brigette. I can never leave

> them

> > alone for even a second. Usually when gets close,

Brigette

> > moves away or puts down the toy she was holding. Is this

> > psychological?

> > Another thing. Sorry, I know this is long. She was born 4 weeks

> > early. She couldn't breath when she was born but they still gave

> her

> > to me and she stayed with me in recovery for about 45 minutes

> until

> > my mom noticed she kept making a grunting noise. The nurse took

> her,

> > checked her chest and immediately took her to NICU. She was in

> NICU

> > for 11 days on a ventilator. At one time, she extubated herself.

> > The hospital never told me if any damage was done. I assumed

there

> > wasn't since they gave her a brain scan and other tests that I

> don't

> > really know much about.

> > Anyway, we're waiting on a neuro evaluation at the Cleveland

> Clinic

> > and neuro tests at the University Hospitals, but that is not til

> > Sept. I don't think I can handle waiting 4 months to find out

> what's

> > wrong with my baby. Any suggestions on who else I could try for

> neuro

> > tests?

> > Early intervention specialist is coming next Monday. And the ped

> dr.

> > ordered a lead, anemia and thyroid blood test.

> > What I really want her to have is her heavy metals checked. If

my

> > doctor won't do it, do you know how I can have this done? She's

> still

> > real young and I don't know if they will do it at her age.

> > Has anyone had this done?

> > Well, thank you for reading.

> >

> >

>

> Hi ,

> You have a lot of points here and most are one's that are shared

by

> many parents of a child with autims including myself.

> My first point would be a question. Have you taken Bridgett for

any

> kind of diagnosis testing/has she been evaluated for autism? If

not

> try calling the Cleveland Clinic Center for Autism at the Child

> Rehab hospital. I know they have worked with at least one girl

who

> was 18 months old and it is never too soon, you just have to make

> sure you go where there is adequate education and experience. The

> CCCA can point you to the right people.

> Second, do not worry about your fillings unless you are

> planning or might have more children. If you are fillings are

> easily replaced if it gives you cause for concern. The reason I

> tell you not to worry about it is because studies have been done

and

> show people fall into one of three areas when given a diagnosis of

> autism for their child. Getting stuck in the past wondering what

> could of, should of, would of happened and it does nothing to help

> the matters at hand. The second group works on and lives with the

> day to day gains. The third group gets stuck in worrying about

the

> future. According the the studies the second group had the best

> prognosis and so do their children. The whole

> amalgum/mercury/fillings/heavy metal debate is something that

needs

> to be addressed but the scientific community as a whole, no matter

> on what side of the argument, believe these things would not be

the

> cause, but an 'exogenous insult' or something that triggers

> something someone was already predisposed for. While this is not

> all that comforting it does show that you could not possibly

account

> for everything even if something were proven to be an outside

insult.

> Third,the MMR vaccine. There are two ideas in the group that

> believe this is one of the outside catalysts. One is it causes a

> problem through 'autogenic overload', meaning too many things

being

> introduced at one time; the M, the M and the R. You can request

you

> pediatrician give monovalent forms, meaning the M, the M and the R

> separatly and spread out. The second argument is the 'thimerisol'

> issue. My understanding is that even though thimerisol was taken

> out of vaccines it was still in the stockpiles that were still

> allowed to be used and that were not exhaused until roughly 2003.

> You have more to worry about from a flu vaccine or PPD (?)vaccine

> which still contain mercury. There are other things that have to

> watched out for such as Rhogam and some other vaccines that now

call

> mercury an additive instead of a preservative making things a

little

> muckier. You can always choose to not vaccine due to

philosophical

> reasons, but talk with a KNOWLEDGABLE pediatrician who has

training

> with children with developmental disorders. Dr. Wexberg,

MD

> of the Cleveland Clinic (Beachwood office) is a good choice.

> Fourth, about your daughters getting along. Children with

> autism spectrum disorder already have and inherant issue with

> socialization. If other children give added reason to not

> communicate, socialize or reachout our children are getting a

double-

> whammy and are being pushed further behind the developmental

curve.

> It would be advisable to get professional help in having your

older

> child take a positive interest in your younger. Having an older

> sibling of the same sex is a phenominal benifit for Bridgett.

> Fifth, it is almost erie. My son was given to us and did the

> same thing with the grunting and it was found he was not breathing

> right and had to be 'bagged' and intubated. He spent 11 days in

the

> NICU for that and SVT's. He was also about four weeks early due

to

> HELLP syndrome (an atypical form of preeclampsia). What is

> interesting or maybe not is that when there is some

neuro/biological

> issue with a baby in eutero it is not uncommon for mothers to have

> problems during birth. The babies atypical neuro/biological issue

> would be the impetus and not the other way around with the

atypical

> delivery being the cause of a disorder. To alleivate any concerns

> talk with your doctor and do some research on your own, but I

> already have and have found a lot of data that bears this out.

> Next, Dr. DeMio who I tell you about with mixed feelings is

> someone who is very familiar with the chemistry of heavy metals

and

> works in this area being a parent of a child with autism himself

and

> a past chemistry professor and now a medical doctor. Use a good

> pediatrician, like I mentioned above, to filter what someone like

> Dr. DeMio tells you, you should do.

> Lastly, the fact that you have such a big head start on

> whatever the problem might be is to your benefit and credit.

> Surround yourself with the right people on behalf of your

daughter.

> Interview, ask questions and get references. Keep your circle

> limited to people who can benefit your family. If you take the

> advice from friends, family, stranger, magazines, T.V., the

> Internet, etc., etc., etc., including me as you do not know me,

you

> can drive yourself crazy. Weight everything you hear, pick and

> choose, and be choosy about what your are going to do.

> P.S. Intervention Specialists come in all flavors too and

are

> not always the most helpful even if they are coming from a place

of

> trying to help and should be well informed. You can contact

> different parent/autism groups and then try to get under the wing

of

> someone who has a child with similiar issues as your child and is

a

> little farther down the same path (and still filter everything

> through what's best for your family).

> Good luck and God bless,

> Shane

>

[Guest guest]

Great email Shane. I agree with everything. I have two on the

spectrum and the earlier you start the better off you are.

I can tell you that my daughter (now 3) was diagnosed by CCCA at 16

months. Although I did not enroll her in their center-based program,

we developed our own program through early intervention (using

behavioral techniques and other scientifically based interventions)

and her symptoms are now very mild. In fact, just this last year,

Dr. Witnitzer indicated that he does not consider her to be on the

spectrum (she now exhibits good eye contact, good joint attention,

and great speech).

Take care.

Debbie

> >

> > Hello,

> > I'm and I live in Brooklyn.

> > I have 2 daughters, (will be 3 in July) and Brigette (just

> > turned 15 months).

> > About 3 months ago, I started noticing changes in Brigette's

> > behavior. She was starting to avoid eye contact and not looking

> when

> > we called her name. Around 11 or 12 months, she first started

> > babbling, but it was very rare. After awhile, she completely

> stopped.

> > Now she just blows raspberries and moans a lot. She's still not

> > walking but she is standing on her own and furniture walking. She

> > doesn't really play with toys, she just bangs them against a

table

> or

> > whatever is near. She also likes to hold a toy or a piece of

paper

> > and shake it, she finds that interesting. When she's holding a

> > bottle, she's slapping at it while drinking. She slaps at a lot

of

> > things. She's into shaking her head 'no' but she's not waving.

The

> > only thing she imitates is clapping. She does love to be held and

> > rocked and will hold her arms out to me to pick her up. She used

> to

> > get excited when I came into the room and cry when I would leave

> but

> > she doesn't do that anymore.

> > I do have fillings in my mouth that I've had

> > since I was a child. I'm wondering if maybe I passed mercury to

> her

> > during pregnancy. This is something I read about recently doing

> > research on the internet. She just had her MMR shot last Saturday

> > which now that I know a lot about it, I regret her getting.

> > She still smiles and laughs. She loves being tickled and held in

> the

> > air. I know she doesn't like her sister. has always been

> very

> > mean to her. When she thought we weren't looking, she would hit,

> > push, kick and jerk toys away from Brigette. I can never leave

> them

> > alone for even a second. Usually when gets close, Brigette

> > moves away or puts down the toy she was holding. Is this

> > psychological?

> > Another thing. Sorry, I know this is long. She was born 4 weeks

> > early. She couldn't breath when she was born but they still gave

> her

> > to me and she stayed with me in recovery for about 45 minutes

> until

> > my mom noticed she kept making a grunting noise. The nurse took

> her,

> > checked her chest and immediately took her to NICU. She was in

> NICU

> > for 11 days on a ventilator. At one time, she extubated herself.

> > The hospital never told me if any damage was done. I assumed

there

> > wasn't since they gave her a brain scan and other tests that I

> don't

> > really know much about.

> > Anyway, we're waiting on a neuro evaluation at the Cleveland

> Clinic

> > and neuro tests at the University Hospitals, but that is not til

> > Sept. I don't think I can handle waiting 4 months to find out

> what's

> > wrong with my baby. Any suggestions on who else I could try for

> neuro

> > tests?

> > Early intervention specialist is coming next Monday. And the ped

> dr.

> > ordered a lead, anemia and thyroid blood test.

> > What I really want her to have is her heavy metals checked. If my

> > doctor won't do it, do you know how I can have this done? She's

> still

> > real young and I don't know if they will do it at her age.

> > Has anyone had this done?

> > Well, thank you for reading.

> >

> >

>

> Hi ,

> You have a lot of points here and most are one's that are shared by

> many parents of a child with autims including myself.

> My first point would be a question. Have you taken Bridgett for

any

> kind of diagnosis testing/has she been evaluated for autism? If

not

> try calling the Cleveland Clinic Center for Autism at the Child

> Rehab hospital. I know they have worked with at least one girl who

> was 18 months old and it is never too soon, you just have to make

> sure you go where there is adequate education and experience. The

> CCCA can point you to the right people.

> Second, do not worry about your fillings unless you are

> planning or might have more children. If you are fillings are

> easily replaced if it gives you cause for concern. The reason I

> tell you not to worry about it is because studies have been done

and

> show people fall into one of three areas when given a diagnosis of

> autism for their child. Getting stuck in the past wondering what

> could of, should of, would of happened and it does nothing to help

> the matters at hand. The second group works on and lives with the

> day to day gains. The third group gets stuck in worrying about the

> future. According the the studies the second group had the best

> prognosis and so do their children. The whole

> amalgum/mercury/fillings/heavy metal debate is something that needs

> to be addressed but the scientific community as a whole, no matter

> on what side of the argument, believe these things would not be the

> cause, but an 'exogenous insult' or something that triggers

> something someone was already predisposed for. While this is not

> all that comforting it does show that you could not possibly

account

> for everything even if something were proven to be an outside

insult.

> Third,the MMR vaccine. There are two ideas in the group that

> believe this is one of the outside catalysts. One is it causes a

> problem through 'autogenic overload', meaning too many things being

> introduced at one time; the M, the M and the R. You can request

you

> pediatrician give monovalent forms, meaning the M, the M and the R

> separatly and spread out. The second argument is the 'thimerisol'

> issue. My understanding is that even though thimerisol was taken

> out of vaccines it was still in the stockpiles that were still

> allowed to be used and that were not exhaused until roughly 2003.

> You have more to worry about from a flu vaccine or PPD (?)vaccine

> which still contain mercury. There are other things that have to

> watched out for such as Rhogam and some other vaccines that now

call

> mercury an additive instead of a preservative making things a

little

> muckier. You can always choose to not vaccine due to philosophical

> reasons, but talk with a KNOWLEDGABLE pediatrician who has training

> with children with developmental disorders. Dr. Wexberg, MD

> of the Cleveland Clinic (Beachwood office) is a good choice.

> Fourth, about your daughters getting along. Children with

> autism spectrum disorder already have and inherant issue with

> socialization. If other children give added reason to not

> communicate, socialize or reachout our children are getting a

double-

> whammy and are being pushed further behind the developmental

curve.

> It would be advisable to get professional help in having your older

> child take a positive interest in your younger. Having an older

> sibling of the same sex is a phenominal benifit for Bridgett.

> Fifth, it is almost erie. My son was given to us and did the

> same thing with the grunting and it was found he was not breathing

> right and had to be 'bagged' and intubated. He spent 11 days in

the

> NICU for that and SVT's. He was also about four weeks early due to

> HELLP syndrome (an atypical form of preeclampsia). What is

> interesting or maybe not is that when there is some

neuro/biological

> issue with a baby in eutero it is not uncommon for mothers to have

> problems during birth. The babies atypical neuro/biological issue

> would be the impetus and not the other way around with the atypical

> delivery being the cause of a disorder. To alleivate any concerns

> talk with your doctor and do some research on your own, but I

> already have and have found a lot of data that bears this out.

> Next, Dr. DeMio who I tell you about with mixed feelings is

> someone who is very familiar with the chemistry of heavy metals and

> works in this area being a parent of a child with autism himself

and

> a past chemistry professor and now a medical doctor. Use a good

> pediatrician, like I mentioned above, to filter what someone like

> Dr. DeMio tells you, you should do.

> Lastly, the fact that you have such a big head start on

> whatever the problem might be is to your benefit and credit.

> Surround yourself with the right people on behalf of your

daughter.

> Interview, ask questions and get references. Keep your circle

> limited to people who can benefit your family. If you take the

> advice from friends, family, stranger, magazines, T.V., the

> Internet, etc., etc., etc., including me as you do not know me, you

> can drive yourself crazy. Weight everything you hear, pick and

> choose, and be choosy about what your are going to do.

> P.S. Intervention Specialists come in all flavors too and are

> not always the most helpful even if they are coming from a place of

> trying to help and should be well informed. You can contact

> different parent/autism groups and then try to get under the wing

of

> someone who has a child with similiar issues as your child and is a

> little farther down the same path (and still filter everything

> through what's best for your family).

> Good luck and God bless,

> Shane

>

[Guest guest]

That is great news, Debbie!!

--- ddzlaw <zielinski@...> wrote:

> Great email Shane. I agree with everything. I have

> two on the

> spectrum and the earlier you start the better off

> you are.

>

> I can tell you that my daughter (now 3) was

> diagnosed by CCCA at 16

> months. Although I did not enroll her in their

> center-based program,

> we developed our own program through early

> intervention (using

> behavioral techniques and other scientifically based

> interventions)

> and her symptoms are now very mild. In fact, just

> this last year,

> Dr. Witnitzer indicated that he does not consider

> her to be on the

> spectrum (she now exhibits good eye contact, good

> joint attention,

> and great speech).

>

> Take care.

> Debbie

>

>

>

>

>

> > >

> > > Hello,

> > > I'm and I live in Brooklyn.

> > > I have 2 daughters, (will be 3 in July)

> and Brigette (just

> > > turned 15 months).

> > > About 3 months ago, I started noticing changes

> in Brigette's

> > > behavior. She was starting to avoid eye contact

> and not looking

> > when

> > > we called her name. Around 11 or 12 months, she

> first started

> > > babbling, but it was very rare. After awhile,

> she completely

> > stopped.

> > > Now she just blows raspberries and moans a lot.

> She's still not

> > > walking but she is standing on her own and

> furniture walking. She

> > > doesn't really play with toys, she just bangs

> them against a

> table

> > or

> > > whatever is near. She also likes to hold a toy

> or a piece of

> paper

> > > and shake it, she finds that interesting. When

> she's holding a

> > > bottle, she's slapping at it while drinking. She

> slaps at a lot

> of

> > > things. She's into shaking her head 'no' but

> she's not waving.

> The

> > > only thing she imitates is clapping. She does

> love to be held and

> > > rocked and will hold her arms out to me to pick

> her up. She used

> > to

> > > get excited when I came into the room and cry

> when I would leave

> > but

> > > she doesn't do that anymore.

> > > I do have fillings in my mouth that I've had

> > > since I was a child. I'm wondering if maybe I

> passed mercury to

> > her

> > > during pregnancy. This is something I read about

> recently doing

> > > research on the internet. She just had her MMR

> shot last Saturday

> > > which now that I know a lot about it, I regret

> her getting.

> > > She still smiles and laughs. She loves being

> tickled and held in

> > the

> > > air. I know she doesn't like her sister.

> has always been

> > very

> > > mean to her. When she thought we weren't

> looking, she would hit,

> > > push, kick and jerk toys away from Brigette. I

> can never leave

> > them

> > > alone for even a second. Usually when

> gets close, Brigette

> > > moves away or puts down the toy she was holding.

> Is this

> > > psychological?

> > > Another thing. Sorry, I know this is long. She

> was born 4 weeks

> > > early. She couldn't breath when she was born but

> they still gave

> > her

> > > to me and she stayed with me in recovery for

> about 45 minutes

> > until

> > > my mom noticed she kept making a grunting noise.

> The nurse took

> > her,

> > > checked her chest and immediately took her to

> NICU. She was in

> > NICU

> > > for 11 days on a ventilator. At one time, she

> extubated herself.

> > > The hospital never told me if any damage was

> done. I assumed

> there

> > > wasn't since they gave her a brain scan and

> other tests that I

> > don't

> > > really know much about.

> > > Anyway, we're waiting on a neuro evaluation at

> the Cleveland

> > Clinic

> > > and neuro tests at the University Hospitals, but

> that is not til

> > > Sept. I don't think I can handle waiting 4

> months to find out

> > what's

> > > wrong with my baby. Any suggestions on who else

> I could try for

> > neuro

> > > tests?

> > > Early intervention specialist is coming next

> Monday. And the ped

> > dr.

> > > ordered a lead, anemia and thyroid blood test.

> > > What I really want her to have is her heavy

> metals checked. If my

> > > doctor won't do it, do you know how I can have

> this done? She's

> > still

> > > real young and I don't know if they will do it

> at her age.

> > > Has anyone had this done?

> > > Well, thank you for reading.

> > >

> > >

> >

> > Hi ,

> > You have a lot of points here and most are one's

> that are shared by

> > many parents of a child with autims including

> myself.

> > My first point would be a question. Have you

> taken Bridgett for

> any

> > kind of diagnosis testing/has she been evaluated

> for autism? If

> not

> > try calling the Cleveland Clinic Center for Autism

> at the Child

> > Rehab hospital. I know they have worked with at

> least one girl who

> > was 18 months old and it is never too soon, you

> just have to make

> > sure you go where there is adequate education and

> experience. The

> > CCCA can point you to the right people.

> > Second, do not worry about your fillings

> unless you are

> > planning or might have more children. If you are

> fillings are

> > easily replaced if it gives you cause for concern.

> The reason I

> > tell you not to worry about it is because studies

> have been done

> and

> > show people fall into one of three areas when

> given a diagnosis of

> > autism for their child. Getting stuck in the past

> wondering what

> > could of, should of, would of happened and it does

> nothing to help

> > the matters at hand. The second group works on

> and lives with the

> > day to day gains. The third group gets stuck in

> worrying about the

> > future. According the the studies the second

> group had the best

> > prognosis and so do their children. The whole

> > amalgum/mercury/fillings/heavy metal debate is

> something that needs

> > to be addressed but the scientific community as a

> whole, no matter

> > on what side of the argument, believe these things

> would not be the

>

=== message truncated ===

[Guest guest]

Thanks, I've done A LOT of research in the last 13 months I have

been living with the knowledge of my son's autism.

....Debbie are you one of the newly appointed members of the Autism

Society of Greater Cleveland?

> > >

> > > Hello,

> > > I'm and I live in Brooklyn.

> > > I have 2 daughters, (will be 3 in July) and Brigette

(just

> > > turned 15 months).

> > > About 3 months ago, I started noticing changes in Brigette's

> > > behavior. She was starting to avoid eye contact and not

looking

> > when

> > > we called her name. Around 11 or 12 months, she first started

> > > babbling, but it was very rare. After awhile, she completely

> > stopped.

> > > Now she just blows raspberries and moans a lot. She's still

not

> > > walking but she is standing on her own and furniture walking.

She

> > > doesn't really play with toys, she just bangs them against a

> table

> > or

> > > whatever is near. She also likes to hold a toy or a piece of

> paper

> > > and shake it, she finds that interesting. When she's holding a

> > > bottle, she's slapping at it while drinking. She slaps at a

lot

> of

> > > things. She's into shaking her head 'no' but she's not waving.

> The

> > > only thing she imitates is clapping. She does love to be held

and

> > > rocked and will hold her arms out to me to pick her up. She

used

> > to

> > > get excited when I came into the room and cry when I would

leave

> > but

> > > she doesn't do that anymore.

> > > I do have fillings in my mouth that I've had

> > > since I was a child. I'm wondering if maybe I passed mercury

to

> > her

> > > during pregnancy. This is something I read about recently

doing

> > > research on the internet. She just had her MMR shot last

Saturday

> > > which now that I know a lot about it, I regret her getting.

> > > She still smiles and laughs. She loves being tickled and held

in

> > the

> > > air. I know she doesn't like her sister. has always

been

> > very

> > > mean to her. When she thought we weren't looking, she would

hit,

> > > push, kick and jerk toys away from Brigette. I can never leave

> > them

> > > alone for even a second. Usually when gets close,

Brigette

> > > moves away or puts down the toy she was holding. Is this

> > > psychological?

> > > Another thing. Sorry, I know this is long. She was born 4

weeks

> > > early. She couldn't breath when she was born but they still

gave

> > her

> > > to me and she stayed with me in recovery for about 45 minutes

> > until

> > > my mom noticed she kept making a grunting noise. The nurse

took

> > her,

> > > checked her chest and immediately took her to NICU. She was in

> > NICU

> > > for 11 days on a ventilator. At one time, she extubated

herself.

> > > The hospital never told me if any damage was done. I assumed

> there

> > > wasn't since they gave her a brain scan and other tests that I

> > don't

> > > really know much about.

> > > Anyway, we're waiting on a neuro evaluation at the Cleveland

> > Clinic

> > > and neuro tests at the University Hospitals, but that is not

til

> > > Sept. I don't think I can handle waiting 4 months to find out

> > what's

> > > wrong with my baby. Any suggestions on who else I could try

for

> > neuro

> > > tests?

> > > Early intervention specialist is coming next Monday. And the

ped

> > dr.

> > > ordered a lead, anemia and thyroid blood test.

> > > What I really want her to have is her heavy metals checked. If

my

> > > doctor won't do it, do you know how I can have this done?

She's

> > still

> > > real young and I don't know if they will do it at her age.

> > > Has anyone had this done?

> > > Well, thank you for reading.

> > >

> > >

> >

> > Hi ,

> > You have a lot of points here and most are one's that are shared

by

> > many parents of a child with autims including myself.

> > My first point would be a question. Have you taken Bridgett for

> any

> > kind of diagnosis testing/has she been evaluated for autism? If

> not

> > try calling the Cleveland Clinic Center for Autism at the Child

> > Rehab hospital. I know they have worked with at least one girl

who

> > was 18 months old and it is never too soon, you just have to

make

> > sure you go where there is adequate education and experience.

The

> > CCCA can point you to the right people.

> > Second, do not worry about your fillings unless you are

> > planning or might have more children. If you are fillings are

> > easily replaced if it gives you cause for concern. The reason I

> > tell you not to worry about it is because studies have been done

> and

> > show people fall into one of three areas when given a diagnosis

of

> > autism for their child. Getting stuck in the past wondering

what

> > could of, should of, would of happened and it does nothing to

help

> > the matters at hand. The second group works on and lives with

the

> > day to day gains. The third group gets stuck in worrying about

the

> > future. According the the studies the second group had the best

> > prognosis and so do their children. The whole

> > amalgum/mercury/fillings/heavy metal debate is something that

needs

> > to be addressed but the scientific community as a whole, no

matter

> > on what side of the argument, believe these things would not be

the

> > cause, but an 'exogenous insult' or something that triggers

> > something someone was already predisposed for. While this is

not

> > all that comforting it does show that you could not possibly

> account

> > for everything even if something were proven to be an outside

> insult.

> > Third,the MMR vaccine. There are two ideas in the group

that

> > believe this is one of the outside catalysts. One is it causes

a

> > problem through 'autogenic overload', meaning too many things

being

> > introduced at one time; the M, the M and the R. You can request

> you

> > pediatrician give monovalent forms, meaning the M, the M and the

R

> > separatly and spread out. The second argument is

the 'thimerisol'

> > issue. My understanding is that even though thimerisol was

taken

> > out of vaccines it was still in the stockpiles that were still

> > allowed to be used and that were not exhaused until roughly

2003.

> > You have more to worry about from a flu vaccine or PPD (?)

vaccine

> > which still contain mercury. There are other things that have

to

> > watched out for such as Rhogam and some other vaccines that now

> call

> > mercury an additive instead of a preservative making things a

> little

> > muckier. You can always choose to not vaccine due to

philosophical

> > reasons, but talk with a KNOWLEDGABLE pediatrician who has

training

> > with children with developmental disorders. Dr. Wexberg,

MD

> > of the Cleveland Clinic (Beachwood office) is a good choice.

> > Fourth, about your daughters getting along. Children with

> > autism spectrum disorder already have and inherant issue with

> > socialization. If other children give added reason to not

> > communicate, socialize or reachout our children are getting a

> double-

> > whammy and are being pushed further behind the developmental

> curve.

> > It would be advisable to get professional help in having your

older

> > child take a positive interest in your younger. Having an older

> > sibling of the same sex is a phenominal benifit for Bridgett.

> > Fifth, it is almost erie. My son was given to us and did

the

> > same thing with the grunting and it was found he was not

breathing

> > right and had to be 'bagged' and intubated. He spent 11 days in

> the

> > NICU for that and SVT's. He was also about four weeks early due

to

> > HELLP syndrome (an atypical form of preeclampsia). What is

> > interesting or maybe not is that when there is some

> neuro/biological

> > issue with a baby in eutero it is not uncommon for mothers to

have

> > problems during birth. The babies atypical neuro/biological

issue

> > would be the impetus and not the other way around with the

atypical

> > delivery being the cause of a disorder. To alleivate any

concerns

> > talk with your doctor and do some research on your own, but I

> > already have and have found a lot of data that bears this out.

> > Next, Dr. DeMio who I tell you about with mixed feelings is

> > someone who is very familiar with the chemistry of heavy metals

and

> > works in this area being a parent of a child with autism himself

> and

> > a past chemistry professor and now a medical doctor. Use a good

> > pediatrician, like I mentioned above, to filter what someone

like

> > Dr. DeMio tells you, you should do.

> > Lastly, the fact that you have such a big head start on

> > whatever the problem might be is to your benefit and credit.

> > Surround yourself with the right people on behalf of your

> daughter.

> > Interview, ask questions and get references. Keep your circle

> > limited to people who can benefit your family. If you take the

> > advice from friends, family, stranger, magazines, T.V., the

> > Internet, etc., etc., etc., including me as you do not know me,

you

> > can drive yourself crazy. Weight everything you hear, pick and

> > choose, and be choosy about what your are going to do.

> > P.S. Intervention Specialists come in all flavors too and

are

> > not always the most helpful even if they are coming from a place

of

> > trying to help and should be well informed. You can contact

> > different parent/autism groups and then try to get under the

wing

> of

> > someone who has a child with similiar issues as your child and

is a

> > little farther down the same path (and still filter everything

> > through what's best for your family).

> > Good luck and God bless,

> > Shane

> >

>

[Guest guest]

Yes.

>

> ...Debbie are you one of the newly appointed members of the Autism

> Society of Greater Cleveland?

[Guest guest]

Thought so...I'm the 'city worker' who new Jimmy Gnew, et.

al. ...Thanks for the nice words on my reply to the mother with the

concerns with her 15 month old, her fillings, her daughters getting

along, etc. ...I am also one of the newly appointed to the board so

hearing you agreed with what I wrote bodes well for some continuity of

our members...I have the feeling that this will be the rule rather

than the exception...looks like a good group with some great diverse

backgrounds...see you at the meeting Tuesday...

Shane

> >

> > ...Debbie are you one of the newly appointed members of the Autism

> > Society of Greater Cleveland?

>

[Guest guest]

When and where is a meeting. Could you please respond? Or perhaps I missed

it?

Thank You,

Ann

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

From: " ddzlaw " <zielinski@...>

< >

Sent: Monday, May 15, 2006 10:07 AM

Subject: [ ] Re: New here

> Yes.

>

>

> >

> > ...Debbie are you one of the newly appointed members of the Autism

> > Society of Greater Cleveland?

>

>

>

>

>

>

>

>

> is a networking and support group of " Parent to Parent for

Autism " .

>

[Guest guest]

Ann,

Monthly meetings are generally held on the 1st Wednesday of every

month at St. Basil's Education Center, Room 8 located at the rear of

8700 Brecksville Rd. in Brecksville Ohio. See

http://www.asgc.org/index.htm for more details.

Thanks,

Debbie

> > >

> > > ...Debbie are you one of the newly appointed members of the

Autism

> > > Society of Greater Cleveland?

> >

> >

> >

> >

> >

> >

> >

> >

> > is a networking and support group of " Parent to Parent

for

> Autism " .

> >

[Guest guest]

In a message dated 5/15/2006 10:09:03 AM Eastern Standard Time, zielinski@... writes:

Yes. >> ...Debbie are you one of the newly appointed members of the Autism > Society of Greater Cleveland?

I have a question since our local autism group is not the ASA, do board members and officials get elected yearly or does someone up the food chain appoint everyone and you stay until you are removed or quit?

Roxanna ô¿öAutism Happens

[Guest guest]

ASGC is currently undergoing significant changes. Although I cannot

speak as to how officers were elected in the past, the Board of

Trustees is new. This board was put together recently to help ASGC

move forward and take ASGC in new directions. The new board is

currently participating in strategic planning for the organization.

The board members were selected based on past participation with ASGC

and their affiliation in the community. I believe I was selected

based on the fact that both my children are on the spectrum, and I am

also an attorney. I also am involved in other organizations related

to autism.

I'm sure in the future the new board will develop procedures as to

board terms and how officers are elected.

Thanks,

Debbie

P.S. Shane, feel free to add anything I may have missed.

> >

> > ...Debbie are you one of the newly appointed members of the

Autism

> > Society of Greater Cleveland?

>

>

>

>

>

> I have a question since our local autism group is not the ASA, do

board

> members and officials get elected yearly or does someone up the

food chain

> appoint everyone and you stay until you are removed or quit?

>

>

> Roxanna ô¿ö

> Autism Happens

>

[Guest guest]

>

> Hi.

>

> I am Shanna. I am 31 years old and I have been diagnosed with

> Degenerative Disk Disease, Fibromyalgia, Raynaud's, and some form of

> Arthritis (doc is having trouble narrowing it down); in addition I

have

> other non-related health issues such as asthma, heaps of allergies,

> bipolar disorder, migraines, etc. Translation: life isn't a whole

lot

> of fun.

>

> (((((Shanna))))Hugs to you and welcome to the group. Sorry for all

you troubles hope you get some relief soon..

Janet IN IL

[Guest guest]

>

> Hi.

>

> I am Shanna. I am 31 years old and I have been diagnosed with

> Degenerative Disk Disease, Fibromyalgia, Raynaud's, and some form

of

> Arthritis (doc is having trouble narrowing it down); in addition I

have

> other non-related health issues such as asthma, heaps of allergies,

> bipolar disorder, migraines, etc. Translation: life isn't a whole

lot

> of fun.

>

> So far, I have been sero-negative for RA and have tested negative

for

> Lupus. My sed rate at last check was running a little high, she

(doc)

> said and she said my body is " older " than my chronological age.

The

> only rheumatologist I have seen so far (a few years ago, per my

previous

> PCP) told me that since I didn't have the RA factor and all my

other

> tests were relatively normal, barring the Fibro touch-points that

my

> joint pain must be caused by the Fibro, and that there was no way I

> could have RA without having the RA factor (which I know is totally

> inaccurate). He spent all of 5 minutes with me. My pain levels

have

> been increasing since then, with more problems in my hips, knees,

and

> hands. My current doc is sending me to see my mother's/sister's

> rheumatologist to see what he says. She has also retested me for

RA

> factor, and probably lupus and the rest of the whole shebang (I

haven't

> gotten the results back yet) and to see how high my sed rate is

this time.

>

> As far as family history goes:

> Mom has sero-negative jeuvenile-onset RA, Fibro, Degenerative Disk

> Disease, Crohn's Disease/Ulcerative Colitis, and a host of

> allergies/asthma, etc. She does on very rare occasions test

positive

> for RA factor.

> My middle sister (I'm the oldest) has Degenerative Disk Disease

(see a

> pattern forming here?), Spinal Stenosis, Fibro, and all of the

assorted

> allergies Mom has.

> My youngest sister has so far gotten off relatively easy in that

she has

> no known rheumatological or autoimmune diseases. She does have a

blood

> pressure problem and some minor allergies.

>

> My middle sister and I are also both carriers for the cystic

fibrosis

> gene, and my daughter has cystic fibrosis. (At this point we are

unsure

> whether or not this plays a part in our allergy issues or not,

since

> I've seen one study that linked some allergies to being a carrier

for

> the gene, however it was a small study, so it isn't definitive

proof.)

>

> Anyhow, my mother and I both think that I'm likely sero-negative RA

(and

> at this point my doc is beginning to connect the dots, too).

> Unfortunately, so far nobody's coming up with a good answer as to

what's

> going on with my joints. (The fibro is what's doing the muscles

in, but

> that's a totally different type of pain from my joints.)

>

> I'm just really tired of feeling decades older than I should, and

being

> unable to do things I'd really like to do (it hurts to do much of

my

> crocheting at this point, and of course lifting my daughter is

> particularly painful). I can't stay on my computer too long

because my

> hands/wrists/elbows/neck/back just kill me. I had to take a step-

down

> at work because I'm no longer capable of doing the work I was

doing. I

> have trouble doing laundry at home because bending over to get to

the

> clothes or the dryer is painful and carrying the basket is out of

the

> question at this point. My hubby's been really good about the

whole

> thing, hasn't said anything, but I know it has to frustrate the

heck out

> of him.

>

> I dunno what to think at this point. I'm just freaking tired and

in

> pain /all the time/, I can't even sleep without meds because every

time

> I roll over I wake up because it hurts. I'm on Flexeril and

> antidepressant named Tegretol (have to take one anyhow) that let

me

> sleep without using any sleeping pills, so at least I don't have to

> worry about addiction or anything (which is one problem I have

> thankfully never had to deal with). I'm also on Nabumetone

(highest

> dose they can give me) for the pain, but frankly while it does help

with

> the inflammation and allows me more joint movement than I have

without

> it, it isn't doing much at all for the pain. In addition, I'm on

> Cymbalta (mood stabilizer), Zyrtec (allergies), Singulair (asthma,

> allergies), Allegra (allergies), Advair Diskus (asthma), Maxalt

> (migraines only - as needed), Phenergan (nausea from the migraines -

as

> needed), Ultracet (migraines only - as needed), and Albuterol

inhaler

> (asthma - as needed).

>

> Anyhow, this is kinda what's going on...any advice/suggestions?

>

> Shanna

> /ChaosAngel/

>

Angel,

It sounds as though you have really had a tough time of it. It makes

it so much harder when they don't diagnose it....gee if her mother

has it (ra) and there are all these other things going on medically

in her family ...what do you think the odds are that she has it too??

Sometimes Dr.s totally amaze me.(in a bad way) And then I meet one

that is such a great dr and helps so much...that you forgive the

others for their lack of compassion and common sense. the good news

is that you have come to the right place..... there are lot of people

who can emphasize with you becaue we all are pretty much comming f

rom the same place! It is a great place to ask questions and to

VENT...feel free to vent. We all have to be ale to let it out!!!!

Welcome, I hope you like it here! Jenna

[Guest guest]

Judy

I have been DX with seronegative RA for 5years now. I have all the problems,

signs and symptoms, including fibrosis in my lungs form the RA. But in all

this time I have yet to have a positive blood test. I have been lucky enough

to find a rheumy who know I am not making things up, even before the problems

with my lungs. in WI

[Guest guest]

Welcome to the group cutterpup!

This is a very nice, friendly and informative group. Everyone is so

helpful! What is your name so we don't have to keep calling you

cutterpup?

It sounds like you have been through so much. Sorry that despite

your symptoms your lab comes back normal. I am unfamiliar with sero-

negative arthritis. Can you or someone tell me more about it?

Do you see someone now for your hypothryoidism? That's really

important. Are you now taking a thyroid hormone replacement pill?

I did have hypothryroidism since 1994 until last year when I found

out I have thyroid cancer.

Since you can't tolerate soy products maybe you are developing a soy

allergy. Be careful what you eat now. Same true with shellfish since

that can cause allergic symptoms.

Glad to meet you! Sending warm hugs your way.

Debbie L

Fibro, OA, DDD

-- In , " cutterpup " <cutterpup@...> wrote:

>

> Hi all. I'm new here and looking for answers, advice and the

> occasional shoulder to cry on. Brief history. I'm fifty,

married,

> female with two grown children. I was told at 17 that I had

> arthritis. When it got really bad about seven years ago my doc

ran

> all the usually bloodwork, took xrays and sent me to a

> rhematologist. She did a brief exam, told me I had fibro and

> dismissed me. He then sent me to an ortho who over the course of

> four years fused one finger and reconstructed both of my large

> toes. Each year since then my bloodwork has come back normal but

> I've been feeling worse and worse. During that time I also

> underwent a total abdominal hysterectomy due to cysts, myomas,

> fibroids and a large amount of adhesions from prior c-sections.

> I've had three surgeries since then for recurring cysts (ovarian

> remennant syndrome) and adhesions.

> Last winter I devolped chostrochondritis and never really

> recovered. From there i started with sever numbness in my right

> hand, finger jopint swelling and bilateral pain in shoulders,

> elbows, wrists and fingers. Doc did all the bloodwork again, this

> time all the arthritis tests were still normal but the platelets

and

> mcgs were low and my thyroid was screwed up. Further tests showed

I

> have autoimmune hypothyroidism. Due to that he sent me to an

> immunological rheumatologist who said no fibro, no carpral tunnel

> but sever inflammatory sero-negative arthritis.

> Now I've devolped swollen and red fingertips with the skin peeling

> and cannot tolerate shellfish (which i used to love) and soy flour

> products.

> AARRGGHHH..I'm looking for a name to hang on all of this.

> Thanks for letting me vent.

>

[Guest guest]

welcome donna marie,

you will find that age really does not matter in this group. we are

all suffering alike, and there is lots of support around here. I

myself has fibromyalgia. an know the great change the deases has in

your life. no one understands unless they live with the pain and

fatgue that you go through. so you see that you have lots of company

here.

love light,

mary

>

> Hi everyone. I joined this group very recently and I would like to

> tell you all a bit about myself. I'm not sure of anyone's age on

this

> forum, but I'm 19 years old. I was diagnosed with rheumatoid

> arthritis

> and fibromyalgia a year ago. A lot has changed since then.

Recently,

> my doctor has told me that I have severe fibromyalgia, and has

> decided

> to re-run blood work for lupus, amoung other conditions. I think

he's

> also checking for chronic fatigue and lyme disease too, and RA

> factor.

> I'm very scared about all of this, and I need people around me who

> won't say things like " you shouldn't let this bother you " or the

> like.

> Well, thats all for my intro.

>

> Bye,

> Donna Marie

>

[Guest guest]

Hi..my name is judy and the cutterpup is actually my dog, long story

but I do answer to cutter online. LOL.

Sero-negative arthritis is the name for what roughly 20% of RA

sufferers have. We have all the symptoms of RA except for the

bloodwork..we are the 20% that never show a positive RF despite

having the disease. kind of like those woman who produce a healthy

baby after nine months of negative pregnancy tests.

I'm seeing my primary care doc for my thyroid, more blood work

tomorrow actually.

I almost forgot during my " history " I had a partial knee replacement

in 1980.

The symptom that is bugging me the most right now (besides my back

which is killing me) is my hands. The fingertips turn bright red

and swell followed by the skin peeling off. Also they get numb

after about five minutes of playing music, writing, etc. Carpral

tunnel has been ruled out.

The sensitivty to soy, shellfish and caffine is fairly new (about

eight weeks) Idon't know if it is due to the RA, the thyroid or some

other mixed up autoimmune issue.

Glad to be here.

judy

> >

> > Hi all. I'm new here and looking for answers, advice and the

> > occasional shoulder to cry on. Brief history. I'm fifty,

> married,

> > female with two grown children. I was told at 17 that I had

> > arthritis. When it got really bad about seven years ago my doc

> ran

> > all the usually bloodwork, took xrays and sent me to a

> > rhematologist. She did a brief exam, told me I had fibro and

> > dismissed me. He then sent me to an ortho who over the course

of

> > four years fused one finger and reconstructed both of my large

> > toes. Each year since then my bloodwork has come back normal

but

> > I've been feeling worse and worse. During that time I also

> > underwent a total abdominal hysterectomy due to cysts, myomas,

> > fibroids and a large amount of adhesions from prior c-sections.

> > I've had three surgeries since then for recurring cysts (ovarian

> > remennant syndrome) and adhesions.

> > Last winter I devolped chostrochondritis and never really

> > recovered. From there i started with sever numbness in my right

> > hand, finger jopint swelling and bilateral pain in shoulders,

> > elbows, wrists and fingers. Doc did all the bloodwork again,

this

> > time all the arthritis tests were still normal but the platelets

> and

> > mcgs were low and my thyroid was screwed up. Further tests

showed

> I

> > have autoimmune hypothyroidism. Due to that he sent me to an

> > immunological rheumatologist who said no fibro, no carpral

tunnel

> > but sever inflammatory sero-negative arthritis.

> > Now I've devolped swollen and red fingertips with the skin

peeling

> > and cannot tolerate shellfish (which i used to love) and soy

flour

> > products.

> > AARRGGHHH..I'm looking for a name to hang on all of this.

> > Thanks for letting me vent.

> >

>

[Guest guest]

River

Welcome to the group. You will find this a good place to find information,

advice, friends and also you are able to vent without hurting anyone's

feelings. I was gone from the group recently because of moving, and really

missed

talking to everyone here. I took Humeri for a couple of years, right now we are

getting ready to change to an IV drug. After a couple of months of only MTX

and pain killers, boy am I ever ready!

Very Interesting about your training dog. I have a niece who has a service

dog to alert her to her seizures. How that dog is able to do that is amazing.

She used to have to wear her helmet everywhere, because of falling during

seizures, but now the dog alerts her when one is coming, and she is able to sit

down, even if it's only the ground it save her from many little injuries.

Plus the dog makes it easier for her to make friends, he is a beautiful

chocolate lab.

Good Luck in WI

[Guest guest]

Welcome, you will find alot of caring people on this support group site, and

you will be flooded with them. I will keep you in my prayers and good luck

with enbrel I am one month old with it now.

Rhonda

[ ] New here

> Hi everyone,

>

> I joined this list today and have been reading through some of the msg

> archives. I'm

> grateful that this list exists and is as active as it is!

>

> I am paraplegic with RA, dx in 2000 44 yrs Young. I had my spinal cord

> injury in 1986.

> Right now I'm on MTX 15mg per wk and Celebrex twice a day. I'm bottoming

> out on MTX,

> this spring and summer have really caused havoc on my RA. Plus I broke my

> L femur in

> May. My RA mainly affects my hands, wrists and elbows. Pretty much

> everything that I can

> move and use is affected. I'm going to talk to my DR about Enbrel next

> month. I have had

> shots in several joints (cortisone gotta love it!), but think I need

> something more to lessen

> the flare-ups.

>

> I work from home as a jewelry/polymer clay artist. The RA has caused big

> problems with

> my productivity but I'm working around that.

>

> My partner is wonderful, she's a massage therapist and helps out

> tremendously. We're

> training a GSD puppy (16mos) as a service dog for me. He's my pal. He

> has a page on

> dogster if you want to see him!

> http://www.dogster.com/pet_page.php?j=t & i=268091

>

>

> Peace,

>

> River

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Hi Robin,

I can tell you that while I had some bad joint pain in the period

between coming down with RA and being dx'd and started on meds, the

worst thing was how awful I felt all over, all the time. Like you,

I just ached all over, and felt " flu-ish " for lack of a better

description.

The good news is tha although I still am having problems with joint

pain, that flu feeling and the OVERWHELMING fatigue I had in the

beginning did resolve relatively soon after I started treatment. I

think once you get on a DMARD, you'll start to see an improvement.

The problem is that DMARDS sometimes get to work slowly, so your doc

MAY put you on prednisone to help you bridge the gap until the

DMARDS kick in.

KAren

>

> hello, I am new to the group. I haven't been officially

diagnosed

> with RA but I have an appointment with the rheumotologist on the

22nd.

> My gp took blood tests and every thing was elevated. ana, c-

reactive

> protien, sed rate and I was positive for rf. So I am assuming I

have

> RA. The pain in my feet hasn't been too bad that last couple of

weeks

> but I feel awful. my muscles feel like jello, they throb. Not

really

> hurt just throb all the time. I can't sleep at night. my

depression

> has been very bad. I am on anti depressants. But I was wondering

if

> anyone could tell me what to do about the muscle thing and the

> weakness. is there any thing I can do untill I go to the

doctor?

>

> thank you

> robin

>

[Guest guest]

Hi there,

I am 44 and have been on methotrexate plus enbrel for a long time. It

took about 6 weeks for the methotrexate to

work for me. However, everybody is different. It is going to be a

challange for you to take care of your child and yourself but

you can do it. I find that lots of people complain lots about pain but

don't take pain meds enough.

I take mine and it lets me live normal..(somewhat).

If I can answer any questions feel free to email me.

Corinne

annierose777 wrote:

>

> Hi everyone... I'm a 37 y.o. just diagnosed with RA. I have been

> taking methotrexate weekly and Diflunisal twice daily (sp?) to

> address it but thusfar have seen only a worsening of my symptoms

> (only been on meds for 3 weeks).

>

> I look forward to learning more about RA and how others are living

> with it.

>

> It is absolutely crucial I find an appropriate treatment as I have a

> 5 year old with a disability and will need my care for the rest of

> her life...

>

> I'm wondering if there are others on methotrexate and how long it

> took to provide relief...

>

> Thanks for your assistance!!!

>

>

[Guest guest]

Hi :

Welcome to the group! You will find great people here,

very supportive, and informative. I have RA, OA,

Raynaud's and Fibromyalgia. From your description, I

would say that you sound as if there is some sort of

autoimmune disease going on - but I am no doctor.

Your symptoms may be a form of CFIDS or Fibro, or any

of a number of diseases, because these autoimmune

diseases often mimic each other with symptoms and it

can take time to reach a final diagnosis.

The doctor who told you that it was all in your head

was dead wrong, and I would be reporting him for that

remark. That is what women it seems are told time and

time again, especially when the doctors cannot find

what is wrong with you by doing blood work, x-rays,

and that sort of thing. These diseases sometimes do

not show up on blood work or other lab tests, but are

diagnosed by symptoms and presentation at the time of

your office examination.

If you are not being seen by a rheumatologist, I would

suggest that strongly. These specialists are more

likely to be able to diagnose an autoimmune disease

than other doctors. I want to wish you the best of

luck in your quest for a diagnosis and treatment. If

you have any more questions, please don't hesitate to

ask. We have a lot of caring people here who have

gone through a lot with doctors and had difficulty in

being properly diagnosed and treated, so I am sure

that one of us will be able to answer you. Hang in

there -

Kathe in CA

--- juliecwarren6818 <juliecwarren@...> wrote:

> Hello all,

> My name is . I hope i can get a few answers

> here or at least a

> little insight. I have been tested for lupus, 13

> yrs ago, but not

> since. Recently have been tested for hypo thyroid

> (runs in my

> family) tests all came back in the normal range. I

> am going to a

> new doc next week. Here's a list of my symptoms

> (which this last

> doc said were all in my head) TIRED all the time,

> weak muscles after

> little activity, sick all the time, hair falling

> out, low blood

> pressure, low body temp, BIG brain fog, balance is

> really off

> (falling and droping things), forgeting things

> easily (really

> starting to effect my driving), speech is slurred at

> times (only a

> word or two), insomnia, but want to nap all the

> time, lossing weight

> and not trying, getting depressed, Raynaud Syndrome

> (hope i spelled

> it right). Along with a host of other things, but i

> think you get

> the picture. Now if i was 80 i would accept all of

> this!! I'm only

> 36!!! I am hoping that this new doc can help me,

> because its just

> getting worse. I do have a slight rash on my face,

> but not hugely

> noticable. Is it possible i could have a mild form

> of Lupus?? What

> are some good questions to ask the doc?? Thanks for

> any input!!!

>

>

>

>

>

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