Introduction

October 8, 2007

,

I think we all have to deal with the 'discipline' issues surrounding therapy.

The kids get sick of it and begin to rebel after a while. I try to incorporate

a reward system for Mark so that he is motivated to continue the work. Some

days, I just have to get angry and remind him that the dyspraxia will not go

away on its own and if he wants to rid him self of it, he must continue to

'work' it.

What I have learned is this: The Brain responds to 3 things: frequency,

intensity and duration. New neural pathways will be formed when an exercise is

done with a combonation of these three items. In order to advance our children

more rapidly and thus make up for lost time, we need to have do exercises with

increased frequency and intensity and thus we can reduce the duration of an

exercise.

So..... what this means is this: once a week therapy simply doesn't cut it. In

order for therapy to have real, long-lasting and sustainable benefits, the

exercises must be incorporated at home on a daily basis. If they are not done

regularly, then the neural pathways will not be developed and the therapy only

provides minimal results.

The brain doesn't say, " Gee, I must make a new connection in this therapy hour

once a week " . (I wish!) No, it needs daily work and then that pathway will

emerge and the connections will be formed.

It took me many years of unsuccessful therapy for me to really 'get' this and

understand why home exercises were so important. Thus, we must ALL get past the

discipline issues and really, really make our kids do these exercises daily at

home.

I know that your son doesn't want or feel like doing them BUT his life will be

so much better for it and he will be a much happier boy in the long run for it.

Somedays I really have to play 'cheerleader' and truly egg Mark on to do the

work that needs to be done.

So, really try to take the exercises that your OT has given you and 'work' them

into your day. Do them not just once a day but 2 or 3 times to get the maximum

benefit so that the particular neural connection will form and then you can move

on to the next grouping of exercises. I know it's hard but it you just have to

insist that he do it.

Good luck and know that we are all experiencing the same troubles.... therapy

gets 'old' after a while but it really does work!

Janice

Mother of Mark, 12

[sPAM] [ ] introduction

I thought I should introduce myself since I just responded to a message and

haven't even said " hi " to the group since joining!

My son, who is 7 years old, does not have apraxia, but does have dyspraxia

and sensory processing issues. I have found this group to be the most

helpful to me in figuring out how to treat his dyspraxia, so I hope you

don't mind if I lurk and occasionally post. I'll try not to take things too

off topic from the actual purpose of the group.

October 19, 2007

Hi Rannveig!! Welcome. Robinrostevik <rostevik@...> wrote: I've been lurking here for a while and thought I'd should pop out and say "hi". My name is Rannveig and I live in Norway. I see most of you are located in the US, and although there are cultural differences and different school systems, I can relate to many postings here.It's my 14 year old son that brought me to this list. He isn't diagnosed, and I'm not even sure he will be, but I do recognize a

lot of the "features" of an AS in him. We've always thought of him as a little "odd", not fitting in, and also not willing to bother to fit in.He's in 9th grade, 2nd year in what I guess would be the equivalent to the "high school". The possible AS diagnose was brought up by the school this spring, and he has now done a WISC III test, an ability and maturity test. The profile of the test was not typical AS, but a diagnose requires more than just this test.Seems like you are a supportive and knowledgeable group :-)Take care,Rannveig/. __________________________________________________

October 20, 2007

Hello Rannveig. I want to welcome you here to this group. There are very nice people here & if you have any questions someone will try to hepl you out. We are raising our 15 yr old grandson who was Dx'd with Asperger/Bipolar/Chronic Motor Tic Disorder. We've had him with us since he was 5 yrs old. My grandson calls me "Grittle" so does my other grandkids. Take care,Betty rostevik <rostevik@...> wrote: I've been lurking here for a while and thought I'd should pop out and say "hi". My name is Rannveig and I live in Norway. I see most of you are located in the US, and although there are cultural differences and different school systems, I can relate to many postings here.It's my 14 year old son that brought me to this list. He isn't diagnosed, and I'm not even sure he will be, but I do recognize a lot of the "features" of an AS in him. We've always thought of him as a little "odd", not fitting in, and also not willing to bother to fit in.He's in 9th grade, 2nd year in what I guess would be the equivalent to the "high school". The possible AS diagnose was brought up by the school this spring, and he has now done a WISC III test, an ability and maturity test. The profile of the test was not typical AS, but a diagnose

requires more than just this test.Seems like you are a supportive and knowledgeable group :-)Take care,Rannveig/. __________________________________________________

November 4, 2007

Hi Ginny. I'm Robin. Welcome!!!Ginny Foreman <ginnyforeman@...> wrote: Hello, I just wanted to introduce myself. My name is Ginny and I havethree children. My oldest, Seth, is seven years old and we are in theprocess of getting a diagnosis after years of going back and forthover whether or not we "wanted/needed" one. He was evaluated at theKennedy Krieger Center in Baltimore and preliminary results indicateAsperger's and ADHD along with a superior range I.Q.(I have read allthe books and

expected this). We have our good days and our bad,actually it seems more like good and bad weeks. I have always thoughtthat his issues seem cyclical or related to something, but I can'tfigure it out. You know, is it the cartoon he watched yesterday, thedye in the lollipop from the bank, etc. I have never successfullyfollowed an elimination diet with him because he eats so few foods,that he would starve. I do not let him eat food with anythingartificial except on rare occasions. I have tried all kinds ofsupplements, occupational therapy, psychologist visits etc. It getspretty overwhelming. He attended a montessori school for preschool,but ultimately there wasn't enough structure for him. He attendedkindergarten at a public school but it was very stressful for him (toomany kids!) and he chewed holes in all his clothing. So, this year Iam homeschooling but carrying him to the public school twice a weekfor 45 min. of art

and music each for a little social contact with kids. About the physcial contact, Seth is over the top, innappropriatelyaffectionate. He behaves like a two year old in this area. Too manykisses etc. Wakes up every night to get in bed with us and needs tolie practically on top of my dh or I. This has started a terriblepattern in our house as my 4 yo son does the same now. He also stillsleeps in a diaper, has never been dry consistently at night. His social skills aren't terrible again depends on the day, but hedoes best when people are willing to listen to endless dinosaur factmonologues. Sound familiar? We are going back and forth about medicating. He is so impulsive andran out in front of a car last week and was almost hit. Very scary. We are on a waiting list to get a second opinion from a developmentalped. but the wait is many months. Also waiting on an appt. to havehis language skills/pragmatics evaluated again

very long wait. So inthe meantime I am going to experiment with magnesium supplementationalong with some caffeine during the day and see what happens. I havedone all of this before but I always try to do too many things at onceand then can't afford to keep it all up, and can't figure out what ishelping. Looking forward to hearing about other's experiences!Peace,Ginny __________________________________________________

January 16, 2008

Brett,

My suggestion, although I have not done this myself is to try genetic

testing?

[ ] Introduction

Hello all,

I have been a member of this group for about 2 weeks and am reading all the

posts with interest. We live in Melbourne, Australia. My son is nearly 6

years old and has autism. He also suffers from verbal apraxia. He has been

doing biomed for about 18mths and has also done ABA therapy for 2.5 years

(since finished). He has approx 100 words and a lot of them are hard to

understand. It seems he can only say words which are taught to him by each

syllable. I can see that a core part of the protocols discussed on this

board are Oils (Omega 3,6,9)/Vit E which my son has been taking for 12 mths

and also intensive speech/language therapy (which we have not done except

the ABA). I also see NACD.org (not available in Aus) and also the listening

program is also discussed. I guess I am writing to ask people's advice as to

what I should be doing in terms of priorities to assist specifically with

the verbal apraxia. He has so many issues sometimes it's hard to know where

to concentrate my efforts. He has also been chelating for 12 months but that

has not helped with speech development, but has helped other areas. He has

also done AIT (auditory integration training), but still has sensitive ears

as he covers them up even when we cannot hear anything.

Appreciate your reply.

Brett

January 17, 2008

In a message dated 1/17/2008 8:20:37 AM Eastern Standard Time, cmcintosh5@... writes:

http://www.disabilitysecrets.com/

Start here.. And you will find some great ideas and advice!

wow, thanks everyone!

JeanStart the year off right. Easy ways to stay in shape in the new year.

January 17, 2008

HI Jean

Welcome, there is a lot of knowledge and support here.

hugs

Wags! Wags! Wags!

Lowry

"There is no psychiatrist in the world like a puppy licking your face."

Author Ben

From: jmckim4184@...Date: Wed, 16 Jan 2008 22:56:12 -0500Subject: ( ) introduction

Hi! My name is and I have been lurking for a week or two before posting. My son is 18 now. He is diagnosed with PDD-NOS with Asperger's tendencies. After reading posts, I see we will fit right in here. We are his guardians now and are applying for SSI. He has been hospitalized twice for aggression and hurting himself. I have four other kids and am particularly interested in adult issues like taxes, SSI, and relationships. Also sibling issues. I am intrigued by the neuro-feedback issue and there is someplace nearby who does this.

in Michigan

Start the year off right. Easy ways to stay in shape in the new year.

January 17, 2008

Hi & welcome. We have full custody of our Grandson who is now almost 16 yrs old. We've had him since he was 5. He is dx'd with Asperger/Bipolar/OCD/Chronic Motor Tic Disorder. Take care, Betty jmckim4184@... wrote: Hi! My name is and I have been

lurking for a week or two before posting. My son is 18 now. He is diagnosed with PDD-NOS with Asperger's tendencies. After reading posts, I see we will fit right in here. We are his guardians now and are applying for SSI. He has been hospitalized twice for aggression and hurting himself. I have four other kids and am particularly interested in adult issues like taxes, SSI, and relationships. Also sibling issues. I am intrigued by the neuro-feedback issue and there is someplace nearby who does this. in Michigan Start the year off right. Easy ways to stay in shape in the new year.

Looking for last minute shopping deals? Find them fast with Search.

January 17, 2008

http://www.disabilitysecrets.com/

Start here.. And you will find some great ideas and advice!

-- ( ) introduction

Hi! My name is and I have been lurking for a week or two before posting. My son is 18 now. He is diagnosed with PDD-NOS with Asperger's tendencies. After reading posts, I see we will fit right in here. We are his guardians now and are applying for SSI. He has been hospitalized twice for aggression and hurting himself. I have four other kids and am particularly interested in adult issues like taxes, SSI, and relationships. Also sibling issues. I am intrigued by the neuro-feedback issue and there is someplace nearby who does this.

in Michigan

Start the year off right. Easy ways to stay in shape in the new year.

January 24, 2008

((((((((( Dee )))))))))))

My asperger Son is 33 and so it was just this past June that his son was diagnosed at 2 and 1/2 and we all had the AHA moment re my Son and my Hubby.

You have come to the right place for tons of support and help.

Welcome

hugs

Wags! Wags! Wags!

Lowry

"There is no psychiatrist in the world like a puppy licking your face."

Author Ben

From: pjdxxxwa@...Date: Thu, 24 Jan 2008 13:00:48 +0000Subject: ( ) Introduction

Hello everyone. My name is Dee and I have a son, age 14, with Asperger's and I suspect my daughter, age 21, also has it but was never able to get her formally diagnosed because according to her we were the problem. Girls. I am (was) an R.N. in my pre-Asperger life. I am a SAHM now and a "teacher" against my will because the schools haven't a clue where I am how to actually teach kids with learning differences. I personally detest the word "disabled" because these kids are NOT disabled they just think differently because they see the world differently. It was actually a Clinical Psychologist with experience working with kids that had ADHD, Tourette's, Autism, etc., that noted the Asperger's and when I looked it up it was one ofthose AHA ! moments tht put all the quirky pieces together that did not fit my son's ADHD diagnosis. When I told my pediatrician what I had learned at the PsyD. office he also had that AHA moment and agreed with the other Dr. This occurred when my son was 8 y/o and we visited the PsyD an average of every 2 weeks for the next five years sharing and learning methods to help my son. Now he is at the place in live where people think of him as shy and are astonished to learn about the Asperger's Syndrome. Still...it is very difficult, as many you are experiencing, for families such as ours with compulsory learning of the Public School Systems. So, at a time when I am nearly ready to give up I decided to join the list and be with others who can understand frustations and perhaps share ideas with others. It is 5 AM here now, so I am not going to share much more right now. = )Dee ><)))*>

January 24, 2008

Hi Dee. I'm Robin. Dee <pjdxxxwa@...> wrote: Hello everyone. My name is Dee and I have a son, age 14, with Asperger's and I suspect my daughter, age 21, also has it but was never able to get her formally diagnosed because according to her we were the problem. Girls. I am (was) an R.N. in my pre-Asperger life. I am a SAHM now and a "teacher" against my will because the schools haven't a clue where I am how to actually teach kids with learning differences. I personally detest the word

"disabled" because these kids are NOT disabled they just think differently because they see the world differently. It was actually a Clinical Psychologist with experience working with kids that had ADHD, Tourette's, Autism, etc., that noted the Asperger's and when I looked it up it was one ofthose AHA ! moments tht put all the quirky pieces together that did not fit my son's ADHD diagnosis. When I told my pediatrician what I had learned at the PsyD. office he also had that AHA moment and agreed with the other Dr. This occurred when my son was 8 y/o and we visited the PsyD an average of every 2 weeks for the next five years sharing and learning methods to help my son. Now he is at the place in live where people think of him as shy and are astonished to learn about the Asperger's Syndrome. Still...it is very difficult, as many you are experiencing, for families such as ours with compulsory learning of the Public School

Systems. So, at a time when I am nearly ready to give up I decided to join the list and be with others who can understand frustations and perhaps share ideas with others. It is 5 AM here now, so I am not going to share much more right now. = )Dee ><)))*>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

January 24, 2008

Welcome to the group Dee!My son is 8, recently diagnosed, and I am getting LOTS of AHA moments and support from these groups after joining about a month ago. Lots of knowledge & understanding you will find. Where abouts are you? You said it was 5 am. Take care, Jo T. (MI) Dee <pjdxxxwa@...> wrote: Hello everyone. My name is Dee and I have a son, age 14, with Asperger's and I suspect my daughter, age 21, also

has it but was never able to get her formally diagnosed because according to her we were the problem. Girls. I am (was) an R.N. in my pre-Asperger life. I am a SAHM now and a "teacher" against my will because the schools haven't a clue where I am how to actually teach kids with learning differences. I personally detest the word "disabled" because these kids are NOT disabled they just think differently because they see the world differently. It was actually a Clinical Psychologist with experience working with kids that had ADHD, Tourette's, Autism, etc., that noted the Asperger's and when I looked it up it was one ofthose AHA ! moments tht put all the quirky pieces together that did not fit my son's ADHD diagnosis. When I told my pediatrician what I had learned at the PsyD. office he also had that AHA moment and agreed with the other Dr. This occurred when my son was 8 y/o and we visited the PsyD an average of every 2

weeks for the next five years sharing and learning methods to help my son. Now he is at the place in live where people think of him as shy and are astonished to learn about the Asperger's Syndrome. Still...it is very difficult, as many you are experiencing, for families such as ours with compulsory learning of the Public School Systems. So, at a time when I am nearly ready to give up I decided to join the list and be with others who can understand frustations and perhaps share ideas with others. It is 5 AM here now, so I am not going to share much more right now. = )Dee ><)))*>

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

February 18, 2008

Hi Joy, that's my name too..

I am older though at 43. You have your hands full.

I work only part time and sometimes that is too much and have

a 19 yr. old and 16 yr. old.

Does the experimental drug helping? How long have you been on it?

Joy

[ ] Introduction

Hi my name is Joy. I have had RA for 15 yrs and I am 40 now. Just

recently I was diagnosed with Fibromyalgia as well. I am currently on

a research medication for the RA but I am still learning about the

Fibromyalgia. I also take prednisone and vicodin for the pain and

swelling. I understand the problems associated with using the blue

handicap sign and people giving you strange looks because you dont

look like you have anything wrong with you. I have two wonderful

children one whom I carried while I had RA but which went into

remission while I was pregnant and then came back full force after I

delivered. I am currently working a full 40hr week in a cooler which

does not help. Lately I have been so tired that I just dont understand

it. Trying to work it all out and get my life back under control. I am

still raising my 9 yr old girl and need all the energy I can get. Any

helpful answers and ideas would be great. Thank You.

February 18, 2008

--

Hi Joy it's nice to meet you!

- In , " jtsassy39 " <jtsassy39@...> wrote:

>

> Hi my name is Joy. I have had RA for 15 yrs and I am 40 now. Just

> recently I was diagnosed with Fibromyalgia as well. I am currently on

> a research medication for the RA but I am still learning about the

> Fibromyalgia. I also take prednisone and vicodin for the pain and

> swelling. I understand the problems associated with using the blue

> handicap sign and people giving you strange looks because you dont

> look like you have anything wrong with you. I have two wonderful

> children one whom I carried while I had RA but which went into

> remission while I was pregnant and then came back full force after I

> delivered. I am currently working a full 40hr week in a cooler which

> does not help. Lately I have been so tired that I just dont understand

> it. Trying to work it all out and get my life back under control. I am

> still raising my 9 yr old girl and need all the energy I can get. Any

> helpful answers and ideas would be great. Thank You.

>

February 21, 2008

Welcome, !

**************Ideas to please picky eaters. Watch video on AOL Living.

(http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

2050827?NCID=aolcmp00300000002598)

February 21, 2008

Hi and Welcome!

Just a little question: have the docs tested for food allergies

beyond the celiac. Sometimes the celiac can come after an exposure to

a primary allergin, my GI says. Like in my kids the question is

whether it was milk then gluten or the other way around. Since we are

now off both no way to know. With a child of your son's age allergy

testing is a little more reliable than at my kids ages so it may be

worth looking into. There is debate on this board about this but

there is science backing up allergy-related learning delays. In my

son allergens clogging up his ears, head and throat caused big

hindrances to his speech and motor skills. Not everyone's answer is

the same but this is just a thought. If you want to talk about this

more I a here or offlist.

Best wishes on your journey.

Liz

>

> Hello, I'm Cozart, mom to , 6-1/2yo, autism, celiac

> dz,and possible apraxia; and Hannah 8 1/2-yo, NT. Based on our own

> research we have felt for a long time that probably has

> apraxia but his SLTs have not been able to really evaluate for this

> because he really had no words or even sounds that he could make

> intentionally. Over the last few months he has made some great

> progress and is now able to immitate some sounds, although it is

still

> a great effort for him. He really has a desire to communicate but

just

> isn't able to form the sounds. He is so proud of the new sounds he

can

> make and uses the few word approximations he has appropriately. I

hope

> to learn from all of you and find ways to help my son continue to

> progress.

>

> C.

>

February 27, 2008

Hi Jo,

Welcome to the group. I have learned so much from the people who post

here.Its so comforting to know there is someone to talk to who truly

understands what you are going though.

Heidi M

On Wed, Feb 27, 2008 at 4:48 PM, <Jolenefive@...> wrote:

> Hi all,

>

> My name is JO, im from Ny.. I just was diagnosed with either ra and or

> psoritic arthritis. Its hard for him to tell as the only thing that showed

> was

> the high crp. Mine was 6.8.. I also have rsd which is another complicating

>

> thing as well. Currently he was to start me on methatrexate as the small

> dose

> of prednisone had me up and walking and i mean small dose. Any information

>

> any of you can give me i would so appreciate.. I also was prescribed the

> folic acid to go with it.

>

> JO

>

> **************Ideas to please picky eaters. Watch video on AOL Living.

> (

>

http://living.aol.com/video/how-to-please-your-picky-eater/rachel-campos-duffy/

> 2050827?NCID=aolcmp00300000002598)

>

February 27, 2008

THank you all for the welcomes.

Jolene

In a message dated 2/28/2008 12:09:52 A.M. Eastern Standard Time,

mapgamez@... writes:

>

> > Hi all,

> >

> > My name is JO, im from Ny.. I just was diagnosed with either ra

and or

> > psoritic arthritis. Its hard for him to tell as the only thing

that showed

> > was

> > the high crp. Mine was 6.8.. I also have rsd which is another

complicating

> >

> > thing as well. Currently he was to start me on methatrexate as

the small

> > dose

> > of prednisone had me up and walking and i mean small dose. Any

information

> >

> > any of you can give me i would so appreciate.. I also was

prescribed the

> > folic acid to go with it.

> >

> > JO

> >jo my name is melynda & i have ra.i to take pred 4mg.a day & mtx 7

pills every friday & folic acic every day.for me prednisone is not my

friend.i have developed severe osteo & my bones r very fragile.mtx is

o.k. but its causing my asophagus to close & its hard for me to

swallow food while im eating.i hope u have better LUCK & god

bless..<melyndagamem>wrote:

> > ************ **************Ideas to please picky eaters. W

Living.

> > (

> > _http://living.http://living.http://living.http://livi_

(http://living.aol.com/video/how-to-please-your-picky-)

eater/rachel-eater/rachel-

> > 2050827?NCID= 2050827?NCID=<W 2050

> >

February 27, 2008

>

> > Hi all,

> >

> > My name is JO, im from Ny.. I just was diagnosed with either ra

and or

> > psoritic arthritis. Its hard for him to tell as the only thing

that showed

> > was

> > the high crp. Mine was 6.8.. I also have rsd which is another

complicating

> >

> > thing as well. Currently he was to start me on methatrexate as

the small

> > dose

> > of prednisone had me up and walking and i mean small dose. Any

information

> >

> > any of you can give me i would so appreciate.. I also was

prescribed the

> > folic acid to go with it.

> >

> > JO

> >jo my name is melynda & i have ra.i to take pred 4mg.a day & mtx 7

pills every friday & folic acic every day.for me prednisone is not my

friend.i have developed severe osteo & my bones r very fragile.mtx is

o.k. but its causing my asophagus to close & its hard for me to

swallow food while im eating.i hope u have better LUCK & god

bless..<melyndagamez>wrote:

> > **************Ideas to please picky eaters. Watch video on AOL

Living.

> > (

> > http://living.aol.com/video/how-to-please-your-picky-

eater/rachel-campos-duffy/

> > 2050827?NCID=aolcmp00300000002598)

> >

March 13, 2008

Hi,

I was wondering how you are planning on healing the cavitations?

Thanks,

TK

> While NT has helped me in a number of ways there are still some health

> concerns that I'm wanting to address - mainly improving my

> concentration and my digestion and releasing old stale emotions.

> There's lots of emotional and neurological stuff in my family and

> that's been a focus of my study. Along my healing path I've read a

> tremendous amount about dental problems and neurology - amalgams,

> cavitations, root canals, galvanization, chelation, effects on the

> meridians and such and have gone down the path of replacing mercury

> fillings, and chelating out the heavy metals. I've had ultrasounds

> done of my jawbone, which have exposed lots of cavitations - which are

> likely infected. And I'm about to try a couple of ways of healing the

> cavitations.

>

> I own a second list, adult-metal-chelation, where this whole

> dental detox issue is discussed so I won't go further into that

> discussion here.

>

> I would like someday to have community with nearby folks and enjoy NT

> potlucks. Being recently married and seriously considering a move to

> New Mexico, I don't have the time right now to start a physical

> community but if someone in the San Francisco Bay Area would like to

> start a community, my wife and I would be very interested in

> attending. If I do indeed end up in New Mexico I would like to further

> the work of Weston Price there.

>

> That's all for now.

>

> Happy Sunday.

>

> Sol

>

March 24, 2008

Hi there my name is Jo.. Last year around January i suffered a stress

fracture. It healed and i had a lot of

pain.. They diagnosed me with complex regional pain syndrome. That was

around may or June. I then developed psoriasis. I made an appointment with a

rheumatologist as my mri and my xrays showed arthritis

in my ankle as well as other places. I also made another appointment for

six months later with the rheumatologist i really wanted. In the meantime of

seeing the first well ill be nice rheumy i lost thirty pounds, felt like i had

this huge flu go through me. I kept telling everyone my knees hurt etc etc.

I was bedridden almost three months. I have five kids three at home.

Anyways he sent me back to my primary ... I was livid and no one was treating

me

for the arthritis.. So three months ago i went to the doctor i wanted to see

originally. When he saw me he almost looked like he was going to cry. He

asked me how i was doing it all this time. It was obvious by my joint swelling

etc that i had either ra or psoritic arthritis. He sent me for blood work.

My crp was 6.8 normal i believe is .6. Anyways he put me on 5 mg of

prednisone and i started to get on my feet. No walker and no can except when i

went out. Since then he started me on methatrexate and folic acid, and thank

goodness for Heidi on this list she literally told me to take it. I am not

without the cane and am in a lot less pain. Stick to the appointment sometimes

it takes a couple doctors to get to the puzzle. Trust me ive been to about

20 since last year. Depression also set in and i suffered a nervous

breakdown through this all and am not emotionally and physically getting

better.

Sorry this is so long.

Jolene

In a message dated 3/24/2008 7:28:59 P.M. Eastern Daylight Time,

jhkerch@... writes:

Hang in there, Judy. DON'T cancel the rhuematologist appt. what ever

you do. It sure sounds like RA to me. I was in the same position as

you 1½ yrs ago. Couldn't dress, wash, cook, move, it even hurt to

sit & pee or wipe. I was in Houston at the cllinic at the time. They

referred me to a rheumatologist there, but I was give a 10 month

wait! (And how, pray tell, was I supposed to live in the meantime?

looking like a red balloon about to burst???) Anyway, after moving

back to IL, and right into a rheumatologists office, I was put on

Methotrexate, prednisone & plaquenil, and shortly after Enbrel too. I

can now function, although I tire easily.

Just wanted you to know I understand how miserable you feel, and to

hang in there as well as you can. Cry if you need to! When you're

on the right meds, you'll feel better.

>

> Hello. I'm Judy, I'm a 40-year-old married mom of two boys (ages 9

and 10.5) and I live in Richmond, Virginia. I'm so happy to have

found this group. I don't know if I'm hoping for advice or others'

experiences or just a sympathetic ear or what, but I'm feeling really

low right now.

>

> I haven't received an official diagnosis of RA. My primary care

physician thinks that's what's going on but the labs they've done

(rheumatoid factor, ESR, tests for lupus and gout, etc) have been

normal/negative. I saw a rheumatologist for the first time last

Friday and he said it could be that the virus that I had a couple of

weeks ago that triggered this flareup is still active and is

mimicking RA, or it could be that I actually have RA and am just

testing negative at this point? They took blood to do an anti-CCP

test at the office Friday.

>

> This is the second major incident of this type that I've had. The

first was almost exactly one year ago and it was bad enough that it

prompted me to seek medical attention then as well (I don't go to the

doctor unless it's pretty bad!) They did the same basic labwork

then, minus the anti-CCP test, with the same results, and prescribed

a variety of NSAIDs until we found one that worked for me

(Diclofenac.(Diclofenac.) The pain, inflammation, and stiffness wa

my fingers/hands/my fingers/hands/wrists that first time so I w

orthopedic dr, but by the time the appt actually came up, I was

feeling better so I cancelled it.

>

> Since then, there have been several occasions where I've suffered

moderate pain and swelling but it's never lasted more than a couple

of days and has been controlled with the Diclofenac.

>

> Until about three weeks ago. As I said, I came down with a virus.

The primary symptoms were high fever, chills, body aches, fatigue,

some diarrhea in the beginning. It lasted about five days. By the

fifth day though, my fingers and wrists were unbearably painful,

stiff, and swollen. This time, my toes were affected terribly as

well. Also, my elbows, shoulders, and right knee. The pain was just

horrid, all I could do was lay curled up in a ball and move as little

as possible. I couldn't even brush my teeth or get off the toilet

without my husband's assistance.

>

> I saw my doctor a couple of days after the joint pain/swelling

started. My joints, especially fingers and toes, were visibly

swollen and red, given that this was the second time this had

happened he felt something systemic was going on. They did labs and

I was given a prescription of prednisone, more diclofenac, percocet

for the pain (which honestly didn't help, it was that bad) and a

referral to a rheumatologist.

>

> In the couple of weeks since then, the joint pain has eased to

where it's limited to my hands/wrists for the most part. First thing

in the morning my toes and sometimes elbows still hurt and are stiff

but I can live with that. My hands/fingers/but I can live with that. M

miserable I can't stand it. By about 5:00 am they hurt so badly it

wakes me up. It takes a couple of hours after waking for the

stiffness to ease enough for me to do anything more than cradle my

knotted fists close to my body. I'm still having fevers

occasionally, and I'm so exhausted I can't stand it. The Diclofenac

has torn up my stomach (I have GERD and take Nexium for that) and

wasn't working anyway, the rheumatologist wanted me to try Celebrex

instead but it's not helping either and I'm still having chronic

stomach pain, loss of appetite, bloating, nausea.

>

> This is really starting to take an emotional toll on me and I feel

like such a baby but it's like I'm in this fog all the time anymore.

I can't escape from this pain for more than a couple of hours. And!

I started my period again today. The second one in three weeks! And

I have no chocolate in the house!!! ;o)

>

> Thank you to those of you that have made it this far and listened

to me whine. I feel better just to have gotten it all off my chest

at least!

>

> Judy

>

> [Non-text portions of this message have been removed]

>

**************Create a Home Theater Like the Pros. Watch the video on AOL

Home.

(http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\

000000001)

March 24, 2008

Hey there J...

I cannot tell you how happy I am that the MTX has worked for you, as much as

we all complain about it, it does help us. It's no fun, you should hear the

things I have to say to it on Thursdays now that I take 8...I call it my

fuzzy day. But without it, I'd go pack to the pain I had. With RA I suppose

there will always be some form of pain, but it doesn't have to be 24/7. I'm a

hurtin puppy tonight, but as long as I don't move I'm ok! LOL....Good luck at

your appointment tomorrow! I'll be waiting to hear about it...

Heidi

Massachusetts

To those who believe, no explanation is necessary; to those who dont, no

explanation is possible

In a message dated 3/24/2008 8:43:48 P.M. Eastern Daylight Time,

Jolenefive@... writes:

Hi there my name is Jo.. Last year around January i suffered a stress

fracture. It healed and i had a lot of

pain.. They diagnosed me with complex regional pain syndrome. That was

around may or June. I then developed psoriasis. I made an appointment with a

rheumatologist as my mri and my xrays showed arthritis

in my ankle as well as other places. I also made another appointment for

six months later with the rheumatologist i really wanted. In the meantime of

seeing the first well ill be nice rheumy i lost thirty pounds, felt like i

had

this huge flu go through me. I kept telling everyone my knees hurt etc etc.

I was bedridden almost three months. I have five kids three at home.

Anyways he sent me back to my primary ... I was livid and no one was

treating me

for the arthritis.. So three months ago i went to the doctor i wanted to see

originally. When he saw me he almost looked like he was going to cry. He

asked me how i was doing it all this time. It was obvious by my joint

swelling

etc that i had either ra or psoritic arthritis. He sent me for blood work.

My crp was 6.8 normal i believe is .6. Anyways he put me on 5 mg of

prednisone and i started to get on my feet. No walker and no can except when

i

went out. Since then he started me on methatrexate and folic acid, and thank

goodness for Heidi on this list she literally told me to take it. I am not

without the cane and am in a lot less pain. Stick to the appointment

sometimes

it takes a couple doctors to get to the puzzle. Trust me ive been to about

20 since last year. Depression also set in and i suffered a nervous

breakdown through this all and am not emotionally and physically getting

better.

Sorry this is so long.

Jolene

In a message dated 3/24/2008 7:28:59 P.M. Eastern Daylight Time,

_jhkerch@..._ (mailto:jhkerch@...) writes: