Help needed

[Guest guest]

Melinda...don't know if you've seen these articles...they don't really say

what they won't do..but might be worth passing along to teachers, etc.

Asperger Syndrome: Guide for

Asperger's Syndrome - Educational Management IssuesTeachers

[Guest guest]

Could you repost the link? It didn't come across and this sounds like a good

one...hate to miss it!

J

ppanda65@... wrote:

Melinda...don't know if you've seen these articles...they don't really say

what they won't do..but might be worth passing along to teachers, etc.

Asperger Syndrome: Guide for

Asperger's Syndrome - Educational Management IssuesTeachers

[Guest guest]

Asperger's Syndrome - Educational Management

Issuehttp://members.ozemail.com.au/~prussia/asperger/teach.htm

Asperger Syndrome: Guide for

Thttp://www.udel.edu/bkirby/asperger/teachers_guide.htmleacherss

[Guest guest]

Hello Petru,

> Hi, I need help; I'm at a low point, very low...;been on verious

> antibiotics, lost 25 lbs. out of 130; lately I've been on aspirin and

> next on Bextra. I am having hearing (ear) problems, they seem to

> block, like when climbing when in an airplane, ; I have low grade

> fever and pain on my left flank. Please if any of you has any insight,

> help. I have normal low blood pressure (avg 100/70). Have had RA for

> 19 years. Any one else has experienced the ear blocking symptoms ? how

> can it be handled ? What is Bextra proper dosage ? It does not seem to

> help me (yet - after 2 weeks so far). Have a lot of pain in all

> joints, small or large.....help please....

My daughter had this persistently after a recent cold. She said her

ears were blocked so badly that she couldn't hear properly and she kept

on getting really dizzy,

She used a saline spray which you spray up your nose and kept on

clearing her ears (by holding her nose and blowing gently) to clear the

eustachian tubes. I've heard of other people using grapefruit seed

extract in a spray also.

Chris.

[Guest guest]

How I looked at my son when he was 3 was trying to put myself in his place,

and being in a foreign country, and trying to find someone, anyone who could

understand the English language, for 3 years! You are not being melodramatic,

in fact I would also, include how it affects the entire family, especially his

siblings, I know my older daughter(who is in age the closest to my son) have

a special relationship she was (or tried to be) his translator, and depended

on her to stick up for him in social settings. Good luck.

[Guest guest]

I would go into the fact that it is very difficult to find someone

besides yourself to watch your son. These are some of the things

that I thought were different:

1) Can't hire just a normal teenager to babysit.

2) Hard to find a daycare provider. Some will not even consider

taking a special needs kid. If they do, they may cost more.

3) Needs to be around individuals that have patience and that will

work with his speech needs all day long.

4) Lots of extra time (add how long each day) to work on ST and OT

homework.

5) Creative discipline to help with temper tantrums and frustration

due to lack of speech.

6) Parent and/or child may need to see a psychologist to help with

special needs.

This is just something else. If you stay at home, I would point out

that it would be difficult for anyone put mom or dad to really take

care of your son due to the therapies, the homework, and just 24

hour specialized care that he needs.

Good luck!

Suzi

[Guest guest]

It sounds good to me.

When I wrote up the statement for SSI for Hope I put in everything. How she

tries to tell us the simplest thing, like she wants a drink, and we can't

understand her. Which leaves her so frustrated she throws things. the advice I

got from Hope's therapists when I was writing this up was dont leave out

anything. It may sound a little over the top when you read it, but it's what

you deal with daily. Just be honest on what caring for him is like during a

day. My mother thought I was being melodramatic or playing things up when I

wrote my statement. Then I left her alone with Hope for a couple of hours and

she found out I wasn't.

Toni

[Guest guest]

Don't forget any feeding issues your child may have that are not typical of age.

Is he/she a frequent choker or do you have special preparation involved?

[ ] Re: Help needed

I would go into the fact that it is very difficult to find someone

besides yourself to watch your son. These are some of the things

that I thought were different:

1) Can't hire just a normal teenager to babysit.

2) Hard to find a daycare provider. Some will not even consider

taking a special needs kid. If they do, they may cost more.

3) Needs to be around individuals that have patience and that will

work with his speech needs all day long.

4) Lots of extra time (add how long each day) to work on ST and OT

homework.

5) Creative discipline to help with temper tantrums and frustration

due to lack of speech.

6) Parent and/or child may need to see a psychologist to help with

special needs.

This is just something else. If you stay at home, I would point out

that it would be difficult for anyone put mom or dad to really take

care of your son due to the therapies, the homework, and just 24

hour specialized care that he needs.

Good luck!

Suzi

[Guest guest]

I have a request for help. My mom has a yeast infection. went to doctor and

he said she has a bacterial infection. She doesn't like to take any meds,

never has. She's been pretty healthy but in some pain. Is there anything

natural

she can take or use to get rid of the pain and infection and clear it up.

thanks to all Sharon

[Guest guest]

Yogurt with active cultures works for me. I make it myself.

Mona

fightnautismnow@... wrote:

I have a request for help. My mom has a yeast infection. went to doctor and

he said she has a bacterial infection. She doesn't like to take any meds,

never has. She's been pretty healthy but in some pain. Is there anything

natural

she can take or use to get rid of the pain and infection and clear it up.

thanks to all Sharon

[Guest guest]

> I have a request for help. My mom has a yeast infection. went to

doctor and

> he said she has a bacterial infection. She doesn't like to take any

meds,

> never has. She's been pretty healthy but in some pain. Is there

anything natural

> she can take or use to get rid of the pain and infection and clear

it up.

I have ideas here

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

Dana

[Guest guest]

> Hi,

>

> I am very new to the group and I don't know where to start on chelation.

Here is my main information page, with links to other sites and

different protocols.

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

Dana

[Guest guest]

-

Feel free to email me privately - take a deep breath!

Sherry

srmccann2003 <smccann@...> wrote:

I'm starting to lose sleep and shed too many tears over my son's

therapy. I am blatantly asking for help from those of you who would

be willing to listen to a complicated story and then give me your

impressions and advice. Some of it is too personal for me to put on

the list so I ask that it be done in private emails or if I could

call you. This is a hard thing for me to do. I feel like a failure

to my son, like I should not be in this situation. There are no

support groups in Maine and I've learned the hard way not to trust

the E.I. people. I'm going around and around in my head and not

getting anywhere. Nick is in no danger and he is progressing which

only makes it more confusing. I know you are all busy, for the life

of me I can't keep up with all the posts, so I understand if it is

too much to ask. I guess I just don't know where else to turn.

Thank you,

McCann

smccann@...

[Guest guest]

hi sarah,

please if I could help please email me. christinerome@...

chris

srmccann2003 <smccann@...> wrote:

I'm starting to lose sleep and shed too many tears over my son's

therapy. I am blatantly asking for help from those of you who would

be willing to listen to a complicated story and then give me your

impressions and advice. Some of it is too personal for me to put on

the list so I ask that it be done in private emails or if I could

call you. This is a hard thing for me to do. I feel like a failure

to my son, like I should not be in this situation. There are no

support groups in Maine and I've learned the hard way not to trust

the E.I. people. I'm going around and around in my head and not

getting anywhere. Nick is in no danger and he is progressing which

only makes it more confusing. I know you are all busy, for the life

of me I can't keep up with all the posts, so I understand if it is

too much to ask. I guess I just don't know where else to turn.

Thank you,

McCann

smccann@...

[Guest guest]

Hi ,

The hardest and most important step is realizing there is something

wrong and reaching out for help. The fact that you are, shows all of

us what a loving parent you truly are. Besides -you wouldn't be

normal if you never lost it a bit -as long as you don't go over the

edge. You know yourself best -so it does sound like it is wise to

seek someone to talk to that can help work out a personal plan for

you and your family to improve how things are now. Here is a place

you can call right now no matter what time/day it is when you read

this:

" Call With any Problem, Anytime

1-800-448-3000 (TDD 1-800-448-1833)

Open 24 hours a day, everyday

The Girls and Boys Town National Hotline is a 24-hour crisis,

resource and referral line. Accredited by the American Association

of Suicidology, our Hotline is staffed by trained counselors who can

respond to your questions every day of the week, 365 days a year.

Over the past decade, more than 5 million callers have found help at

the end of the line.

http://www.girlsandboystown.org/hotline/index.asp

A great nonprofit to turn to if you need more support is Friends

Help Connection http://www.48friend.org which was founded by

Roxanne Black who has a heart of gold. It's really meant for the

person who has the health issue, but you could call them Toll-free

at 1-800/48-FRIEND for help.

I also found this from the American Psychological Association

" How may I use APA as a resource?

'Talk to Someone Who Can Help,'

http://helping.apa.org/brochure/index.html brochure about

psychotherapy and choosing a psychologist from the American

Psychological Association can be ordered free of charge. Call 1-800-

964-2000

Do you have a local Speechville support group near you?

http://www.speechville.com/communication-station/regional-support-groups.html

Please also call me if you want to talk at 772 335 5135 (EST) I'm

here for you –just like we all are. (Or email me at lisa@...

with your number and I'll call you)

We all feel alone when we hear " your child has... " from the

doctor/SLP etc. Even when as we read here –it's a diagnosis that

means nothing since it was done by someone who shouldn't even have a

professional license. After the initial shock -it's because most of

us look around us and don't know anyone else going through what we

or our child is. The Internet is amazing and changes all of that for

us. Today we all have each other to share with, cry or laugh with,

learn from, teach or support, even if our child has a rare disorder.

Today there are many parents in this group who can relate to what

you are going though.

Here are just two stories to show you " you are not alone " feeling

overwhelmed:

Families need help and dignity, not punishment.

(As it appeared in the Philadelphia Sunday Inquirer of January 9,

2000)

Sometimes a sick baby will keep you up all night. You worry and you

check to see that your infant is still breathing. What if your child

never got better? What if all the love and the best medical care

didn't change that but your child lived? Who would you become? What

if you had a child like who reportedly had up to 30 seizures

in a single day?

I can tell you that it is a grief like no other. It will take you

places you never wanted to go...

(read the whole article at

http://www.specialfamilies.com/inquirer_op_ed.htm )

" ...I saw this dream as a sign that Tariq would speak to me again, if

only I would work with him to make it happen. Desperate to document

evidence of Tariq's progress, I taped his grunts, groans and

babbling. I listened to these tapes for hours on end, straining to

hear the emergence of meaningful communication.

Eventually, I began to wake up from this dream feeling exhausted and

overwhelmed. Whenever I'd worked hard at something in my life, I had

gotten results. But now my hopes for Tariq's recovery were fading.

It was hard to fathom that I might have no control over my child's

condition, still more difficult to admit that love was not enough to

help my son...

(read the whole article at

http://www.specialfamilies.com/healing_broken_dreams.htm )

I slso can relate, and not just with Tanner being diagnosed with

apraxia (oral and verbal, hypotonia and sensory integration

dysfunction). Dakota, my first born, and I almost died during his

delivery and I went from being the happy go lucky social butterfly

to the crying lump on the couch under the blanket gently rocking

Dakota's torn and crushed body with tears running down my face

looking up at the ceiling and saying " why my baby, why me?! Never

did anyone in the world feel sorrier for herself than me. That's how

I felt. I didn't take my stress out on Dakota who was a baby at the

time -or my friends or family or anyone but one person. I took all

my anger out on my husband Glenn -who was always my best friend

before Dakota was born.

There were a few things that helped me, some of them included simple

things like walks on the beach and hot chocolate with marshmallows

(and for some reason watching the movie Oklahoma a hundred times),

Here are however the three I found to be most important:

1. Acquiring the knowledge to help Dakota and Tanner and doing what

I needed to do to help them so I didn't feel so helpless. It's a

good feeling to know that you are doing all you possibly can –so

there won't be any " if onlys " in the future. I learned about the " if

onlys " because I started...

2. Reaching out to help others first through Shop-In Service and

then through the nonprofits I founded Children's Apraxia

Network/CHERAB -that helped me more than anything get over feeling

sorry for myself -and made me once again feel thankful that we were

alive rather than sorry for what we went through. And then the one

thing that helped amazingly back then I never credited fish oils as

helping because why would I since nobody told me this would happen

when Glenn and I...

3. Started taking fish oil for health reasons too since both our

Dads died of heart attacks. I don't have to say anything else except

try it -you will see what I and many of us mean. (must be why a

goldfish even looks happy in a paper cup filled with three inches of

tap water) It took hindsight to figure out that is when Glenn and I

stopped the tension and went back to best friends again. Another

incredible side effect for me which I wasn't expecting anything was

I got my memory back! I no longer walk into a room and wonder why

I'm there...which happened to me after Dakota was born at around

only 30 years old! (and I lost even more of my incredible memory

after Tanner was born) Now I once again can tell you who is doing

what voice in an animated movie -and other silly stuff like it that

doesn't matter but that will drive you crazy when you can't remember

it! No research on this yet, but for bad times –there is. Fish oil

helps take the edge off.

http://cms.psychologytoday.com/articles/pto-20041112-000009.html

(look under mood for just one recent article)

And do we sit and wait while some unknowledgeable MDs misdiagnose

and recommend inappropriate therapies for our children? Like

recommending for example ABA (or any type of behavioral therapy!)

for those children who do NOT need behavioral therapy –but who need

motor planning, strengthening and or other therapies like sensory to

help teach them vs. encourage them to talk?! No way –find someone

who is knowledgeable –they are out there. This is not a new

situation and I know how important it is to find the truth now. I

also know how hard it was on my mom too because I was there, as her

baby.

My mom felt alone after I was born. I was born with celiac disease

which almost killed me, like GERD another gastrointestinal

condition. Back then the MDs didn't know that I was born with celiac

disease even though my brother was born with celiac two years

before me. Back then celiac was considered " rare " -now it's known

celiac disease does run in families. More than once after I was born

I was rushed to the hospital malnourished from severe vomiting.

Fortunately for my mom, her sister has her PhD in nursing and knew

right away that I probably had celiac disease just like my older

brother -which is what I was later also diagnosed with. My

mom was told that if she had one more child born with celiac disease

that she would go into the Guinness Book of World Records –celiac

was considered that rare. Celiac disease was not rare -just like

apraxia, people just didn't know the symptoms so some children were

misdiagnosed -and because various treatments weren't known either –

too many died. I could show you pictures of me where even though I

was on a special diet that saved me -I looked like one of those

starving Unicef children during my sick times. I was very sick –in

and out of the hospital. Imagine the guilt of some parents who were

blamed for starving their baby to death back then. My mom said

people used to look at her like she was a mean parent in keeping me

(this rail thin child) from eating so many different foods.

Probably doesn't happen as much today thanks to the Internet. Just

like then -some things we accept as " fact " today will be laughed at

tomorrow as we learn more as the things that were laughed at

yesterday will be viewed as fact today (or tomorrow -fish oil)

Try not to feel so bad about what you are going through -or your

child. We all have amazing abilities to heal. I have two children

that were both considered special needs -one from birth trauma –one

after fevers at 11 months old -and both doing really great today

after years of therapy as it reads in The Late Talker. There are

entire chapters as well in The Late Talker about how to deal with

your frustration and your child's frustration -I know how important

those areas are. (I co authored The Late Talker book with my

children's neurodevelopmental pediatrician Dr. Marilyn Agin and

Malcolm Nicholl –an International Journalist) You can also read

some background online

http://www.cherab.org/information/familiesrelate/workandfamily.html

Dakota

http://www.cherab.org/information/familiesrelate/letter.html Tanner

I can tell you as a child who grew up after being described

as " sickly " as an infant that I'm a very happy person today, don't

have horrible memories of my childhood (other than one time in the

hospital) -and have always been described as happy go lucky -and

rarely am I ever sick today. I was told as sick as I was back then -

I rarely cried, and that's still true today. Dakota and Tanner are

both very happy boys too. I did cry when Dakota and Tanner were

diagnosed however -and more than once after as I learned to deal

with it. And that's OK.

I never let Dakota or Tanner see me cry when their conditions got to

me. I don't believe most parents appreciate how much our children

understand when there is talk in front of the child about

their " condition " as if they weren't there. This is because I

remember my mom crying at the hospital when I was just a baby and

couldn't talk. (then again I remember things most people forget -

even times as a baby -some credit that to the fact I almost died

more than once?) My mom told me my memory was correct –that before

she would leave me in the hospital she would pick me up crying and

hugging me tightly and she would repeat over and over " Please don't

die , please don't die " Back then parents

were not allowed to stay in the hospital overnight like today.

My mom was able to be ahead of the times -and with my aunt having

her doctorate in nursing -once out of the hospital -my brother and I

were put on a strict diet of " no wheat - no sugar - no oil " which at

that time was not considered part of " medical treatment " for celiac

disease. (and why I'm so resistant to special diets unless really

needed) I posted here how I used to want to walk into candy stores

and bakeries just to smell the air. I eat whatever I want today -and

have no symptoms anymore if I eat sugar or wheat –but try not to eat

much wheat. However with oil –like vegetable oils -I get horrible

cramping stomach aches if I eat more than a few potatoes chips or

fried foods -and yet can't believe I didn't know about EFAs oils

(the " good fats " ) and how good they make me feel before a few years

ago -they are amazing.

I also suggest you take some " me " time to do things just because you

like to do them. If you can't find this time while your children are

in school, then find someone that can watch the children (your

husband, a neighbor, friends, family, a babysitter) and for an hour

or two go to the mall, or to see a movie (comedy preferably), or to

work out, or out to eat (with or without friends), or for a

manicure, or for a nature walk, or take a pottery class, etc. Or

even stay home and have some " me " time. Take a hot bubble bath and

perhaps read some Chicken Soup for the Soul books. You'll learn

that time after time some of the worlds greatest came from very

rough beginnings and learned to overcome. The hardship made them

who they became. A diamond is a lump of coal put under intense heat

and pressure over a long period of time.

Even if you never had time for yourself before at say 8:00 PM when

most of the rest of the world is sitting in front of the TV and the

children (may?) be sleeping -then do it for you. For that hour or

two -the laundry won't get any stinkier, your family won't starve

from lack of snacks, the IEP, therapy, advocacy track can wait for

the sun to rise, and you deserve to relax.

Hope this brings you one more friendly voice to show you

" you are not alone " !

=====

[Guest guest]

,

If you need to talk. Feel free to email me. CreBear31@....

Teri with son , 4 who has been dx with motor planning apraxia and I

too am just learning everything.

Take care.

[Guest guest]

Hey there, Sandie. You did the right thing, changing rheumy's. I had

to do that as well because my first one was a joke. As for ignoring

your RA, forget it. It won't work. Been there tried that!! It just

rears its ugly head and says, very loudly, " HERE I AM " !!! When I

first went on methotrexate I got nausea with it. Everyone reacts

differently to it. It takes it a while to work, so you should start

it now. But, if you are that unsure, then it shouldn't hurt to wait

until you see your new rheumy. Many of the RA meds are scarey. I

switched recently to the injectable methotrexate and I am not having

those side effects. In fact, I think it's been more effective.

Hopefully you will have that appointment soon. Good luck to

you...Marina

[Guest guest]

Methotrexate was the first RA medication prescribed by my rheumy when

he diagnosed me. He gave me a brochure about it. I read it and

concluded that if it didn't kill me, it might help me a little. I was

scared, too, but I was also desperate, so I took the pills. I didn't

have any adverse side effects except a low white blood cell count.

If you take methotrexate and do have bad side effects, your rheumy will

try something else. The damage that RA can do is much worse. I think

that the reason that I'm doing so well now, on Enbrel, is that my

rheumy attacked it aggressively from the beginning, before damage was

done to my joints.

Just my two cents' worth. Sue

On Friday, April 29, 2005, at 09:00 PM, slmcc93@... wrote:

> he prescribed lortab for the pain and methotrexate for the RA. I am

> scared to

> take the methotrexate. I know it should help but the side effects

> scare the

> heck out of me. I am sure many of you are on the drug. Can you tell me

> what to

> expect? it is just sitting on my counter staring me in the face and I

> cannot

> bring myself to take them. Part of me wants to totally ignore that I

> have RA

> and pretend that I am fine. I wish that were true.

[Guest guest]

--- slmcc93@... wrote:

> Hi All,

> I am very new to this group and also to RA. I found

> out I had it in November

> of 2004.

> Well, as you may know, I have decided to switch

> rheumy as the one I had just

> put me on Prednisone, plaquenil and voltaren. he

> told me nothing of the side

> effects of the prednisone and even though I told him

> I did not want to stay on

> it, he refused to put me on any other meds due to

> the fact that " they need to

> check my liver every month " Well, none of the meds

> worked for me and I went

> off the prednisone. Armed with my research from this

> group I went back to see

> him. he was not happy at all but did send me for

> x-rays of my hands and feet to

> see what damage has been done. on my way out he

> also told me that I should

> " try to do some tai chi " when I laughed in his face

> and explained that I have

> three kids 2 of them under 3 and a hubby who works

> long hours he then

> said " stress makes it worse " well DUH.

> anyway, I went to see my primary doc to get a new

> referral and he actually

> LISTENED to me. I explained my terrible pain how I

> have totally changed my

> eating habits 6 months ago and also have been doing

> walking exercise tapes (they

> are harder than you think) for 3-4 days a week a

> mile and a half each time and

> haven lost any weight. also that I just want to be

> able to play with my kids

> and not be in pain.

> he prescribed lortab for the pain and methotrexate

> for the RA. I am scared to

> take the methotrexate. I know it should help but the

> side effects scare the

> heck out of me. I am sure many of you are on the

> drug. Can you tell me what to

> expect? it is just sitting on my counter staring me

> in the face and I cannot

> bring myself to take them. Part of me wants to

> totally ignore that I have RA

> and pretend that I am fine. I wish that were true.

>

> Oh my x-rays show that I have a bone spur in my Good

> foot and that my bones

> are deteriorating in my other foot-lovely don't you

> think?

> Any and all comments are welcome, I am sorry this is

> so long.

> I should have my appointment with my new rheumy

> soon.

> Thanks for listening.

>

> sandie

>

> I have been on MTX 10 mgs weekly for 2 years with

very little side effects. With MTX you should also

take folic acid to minimize any side effects and also

have labs checked frequently. I usually feel tired the

day after I take the MTX but function. I had x-rays

done on my feet hands and wrist this week with no

damage done. When I was first diagnosed my labs were

all elevated and I was miserable. My doc also gave me

a dexpac until I could get started on the MTX. About

a month after starting the MTX I noticed a big

improvement in all joints and took only MTX folic acid

and naproxen for almost 2 years. Just during the last

couple of months I have been having more problems-

pain, stiffness.weakness etc. My labs are elevated

again and we are increasing the MTX to 15 mgs weekly

and adding low dose decadron (steroids) temporarily..

If it will prevent the bone and joint damage and keep

me functioning it is definitely worth a little

tiredness one or two days a week. I live a very

active lifestyle and have slowed down some but still

keep most things going. I don't think that would have

been the case otherwise. linda

> removed]

>

>

>

>

>

__________________________________________________

[Guest guest]

Sandie, I have been taking Methotrexate and folic acid for several

years, and like you was afraid to take it as it is a " cancer " drug

(only in much higher doses)and I just knew I was going to die if I

took it! My feet hurt so bad I could hardly walk, my first hint that

something was wrong....my doctor said to wear good running shoes and

not go barefoot! This I did and the feet pain went away after a few

weeks (this was really a " flare " as I look back). A few months later

I developed a knot just above my elbow and the doctor took x-rays,

negative report. Another month or two I had MATCHING knots, one on

eack arm......the doctor looked at my hands and noticed the knuckles

were pink. Only then did he order a blood test for RF, sure enough it

was very high so he sent me to a rhumie doctor. I started out with

four pills a week taken on one day with folic acid daily (this keeps

the side effects of Methotrexate down), I had NO bad reactions. This

has been upped to 6 a year or so later after another " flare " brought

on by stress of father dying and settleing his estate, still no

problems with the dosage. Now I have the injections and like others

here I like them much better, doesn't go through the digestive tract

to cause other problems there (side effects). I still take folic acid

daily, and my next step when needed will be to combine Meth. with

Embrel or one of those type drugs. I have bloodwork done every two

months, and never a problem there. Hope you get to taking the

medicine, be sure to ask about folic acid....sounds awful, just a tiny

pill....healthy for you by its self! Betty

>

> I am sure many of you are on the drug. Can you tell me what to

> expect? it is just sitting on my counter staring me in the face and

I cannot

> bring myself to take them. Part of me wants to totally ignore that I

have RA

> and pretend that I am fine. I wish that were true.

>

> Oh my x-rays show that I have a bone spur in my Good foot and that

my bones

> are deteriorating in my other foot-lovely don't you think?

> Any and all comments are welcome, I am sorry this is so long.

> I should have my appointment with my new rheumy soon.

> Thanks for listening.

>

> sandie

>

>

>

[Guest guest]

I see these comments about 'side effects' all the time and have something to

say about it. I may be out of line, but this is my belief. Side effects are

listed as things that CAN happen, not that WILL happen. If we all looked at

those things, none of us would take any meds. I think that after a patient

is informed, he/she should be able to watch for these side effects after

taking the med in question. I've been taking prednisone since 1990, in doses

of 10-15 mg, and only gained weight while I was bed ridden. My eyes are

still good and almost not affected at all. I did, however, take Vioxx and

Celebrex, and had bad things happen, so I quit taking them and reported my

experience. Bottom line is, don't refuse to take a med because of scary

things that might happen, refuse them if they DO happen.

Sandie, I think you should at least try the MTX unless you have a real

foundation for refusing. As I said, don't let the side effects determine

your future, you have to do that. Good luck,

Dennis

[ ] help needed

> Hi All,

> I am very new to this group and also to RA. I found out I had it in

> November

> of 2004.

> Well, as you may know, I have decided to switch rheumy as the one I had

> just

> put me on Prednisone, plaquenil and voltaren. he told me nothing of the

> side

> effects of the prednisone and even though I told him I did not want to

> stay on

> it, he refused to put me on any other meds due to the fact that " they need

> to

> check my liver every month " Well, none of the meds worked for me and I

> went

> off the prednisone. Armed with my research from this group I went back to

> see

> him. he was not happy at all but did send me for x-rays of my hands and

> feet to

> see what damage has been done. on my way out he also told me that I

> should

> " try to do some tai chi " when I laughed in his face and explained that I

> have

> three kids 2 of them under 3 and a hubby who works long hours he then

> said " stress makes it worse " well DUH.

> anyway, I went to see my primary doc to get a new referral and he actually

> LISTENED to me. I explained my terrible pain how I have totally changed my

> eating habits 6 months ago and also have been doing walking exercise tapes

> (they

> are harder than you think) for 3-4 days a week a mile and a half each time

> and

> haven lost any weight. also that I just want to be able to play with my

> kids

> and not be in pain.

> he prescribed lortab for the pain and methotrexate for the RA. I am scared

> to

> take the methotrexate. I know it should help but the side effects scare

> the

> heck out of me. I am sure many of you are on the drug. Can you tell me

> what to

> expect? it is just sitting on my counter staring me in the face and I

> cannot

> bring myself to take them. Part of me wants to totally ignore that I have

> RA

> and pretend that I am fine. I wish that were true.

>

> Oh my x-rays show that I have a bone spur in my Good foot and that my

> bones

> are deteriorating in my other foot-lovely don't you think?

> Any and all comments are welcome, I am sorry this is so long.

> I should have my appointment with my new rheumy soon.

> Thanks for listening.

>

> sandie

[Guest guest]

Hi Sandie-

I, too, have tried to ignore or wish the RA away. My experience

with the medication, though, is that I have more variety - some bad

days, some fair days, and some good days as well. Whenever I have a

really good day, I always think that I am cured! More wishful

thinking I guess.

My personal experience with Methotrexate/Folic Acid has been

positive. I have had no adverse reactions or side effects, and it

has been helpful with the pain of RA.

I would suggest trying it - if it doesn't work for you/ or you

experience negative side effects - you can always discontinue it and

try something else.

I wish you the best,

in Texas

-- In , slmcc93@c... wrote:

> Hi All,

> I am very new to this group and also to RA. I found out I had it

in November

> of 2004.

> Well, as you may know, I have decided to switch rheumy as the one

I had just

> put me on Prednisone, plaquenil and voltaren. he told me nothing

of the side

> effects of the prednisone and even though I told him I did not

want to stay on

> it, he refused to put me on any other meds due to the fact

that " they need to

> check my liver every month " Well, none of the meds worked for me

and I went

> off the prednisone. Armed with my research from this group I went

back to see

> him. he was not happy at all but did send me for x-rays of my

hands and feet to

> see what damage has been done. on my way out he also told me that

I should

> " try to do some tai chi " when I laughed in his face and explained

that I have

> three kids 2 of them under 3 and a hubby who works long hours he

then

> said " stress makes it worse " well DUH.

> anyway, I went to see my primary doc to get a new referral and he

actually

> LISTENED to me. I explained my terrible pain how I have totally

changed my

> eating habits 6 months ago and also have been doing walking

exercise tapes (they

> are harder than you think) for 3-4 days a week a mile and a half

each time and

> haven lost any weight. also that I just want to be able to play

with my kids

> and not be in pain.

> he prescribed lortab for the pain and methotrexate for the RA. I

am scared to

> take the methotrexate. I know it should help but the side effects

scare the

> heck out of me. I am sure many of you are on the drug. Can you

tell me what to

> expect? it is just sitting on my counter staring me in the face

and I cannot

> bring myself to take them. Part of me wants to totally ignore that

I have RA

> and pretend that I am fine. I wish that were true.

>

> Oh my x-rays show that I have a bone spur in my Good foot and that

my bones

> are deteriorating in my other foot-lovely don't you think?

> Any and all comments are welcome, I am sorry this is so long.

> I should have my appointment with my new rheumy soon.

> Thanks for listening.

>

> sandie

>

>

>

[Guest guest]

Hi Sandie,

I agree very strongly with the response you're receiving. I was

diagnosed at age 4, and my parents soon tired of me spitting out my

meds and complaining about them. They stopped forcing me to take

them. I wasn't treated at all from age 6 to about 16. I had swan

neck deformities on my fingers (when the top portion of the finger

bends forward) in my early teens. Today my arthritis isn't too bad,

but I'm dealing with the terrible damage the many years of no

medications did to my body.

According to my rheumy, docs used to treat children very slowly for

fear of over medicating them. Now he says kids go straight onto Metho

in the effort to stop the damage. That's what RA is -- damage being

done to your joints. Untreated you will be much worse in the long run.

A life insurance salesman once told me that I may have to pay a higher

premium because of the damage medications do. I told my rheumy and he

said, Nonsense. Untreated, RA can attack your heart, eyes and shorten

your life. Not treating it takes the biggest toll.

People love to tell how they " brave it out " by not taking meds for

their various aches and pains. I just tell myself they must not be

suffering much! We with RA believe in meds because they are our life

lines. If I didn't take my Metho and Enbrel I would be operating at a

much lower level. It may take time to find what works for you, but we

must stop the progression of the disease.

And finally (IMHO), although I've heard a lot about people having to

have trouble with Metho and then their docs give them Folic Acid, my

rheumy offered up the Folic Acid the very first time I took it. I'm

not sure why they wouldn't, considering many people have problems

tolerating it without Folic Acid.

Good luck! Take the darn stuff and let us know what happens ;-)

Sharon

> Hi All,

> I am very new to this group and also to RA. I found out I had it in

November

> of 2004.

> Well, as you may know, I have decided to switch rheumy as the one I

had just

> put me on Prednisone, plaquenil and voltaren. he told me nothing of

the side

> effects of the prednisone and even though I told him I did not want

to stay on

> it, he refused to put me on any other meds due to the fact that

" they need to

> check my liver every month " Well, none of the meds worked for me and

I went

> off the prednisone. Armed with my research from this group I went

back to see

> him. he was not happy at all but did send me for x-rays of my hands

and feet to

> see what damage has been done. on my way out he also told me that I

should

> " try to do some tai chi " when I laughed in his face and explained

that I have

> three kids 2 of them under 3 and a hubby who works long hours he then

> said " stress makes it worse " well DUH.

> anyway, I went to see my primary doc to get a new referral and he

actually

> LISTENED to me. I explained my terrible pain how I have totally

changed my

> eating habits 6 months ago and also have been doing walking exercise

tapes (they

> are harder than you think) for 3-4 days a week a mile and a half

each time and

> haven lost any weight. also that I just want to be able to play with

my kids

> and not be in pain.

> he prescribed lortab for the pain and methotrexate for the RA. I am

scared to

> take the methotrexate. I know it should help but the side effects

scare the

> heck out of me. I am sure many of you are on the drug. Can you tell

me what to

> expect? it is just sitting on my counter staring me in the face and

I cannot

> bring myself to take them. Part of me wants to totally ignore that I

have RA

> and pretend that I am fine. I wish that were true.

>

> Oh my x-rays show that I have a bone spur in my Good foot and that

my bones

> are deteriorating in my other foot-lovely don't you think?

> Any and all comments are welcome, I am sorry this is so long.

> I should have my appointment with my new rheumy soon.

> Thanks for listening.

>

> sandie

>

>

>

[Guest guest]

Boy does this sound familiar. For me it was stress. It was also the way I

walked and sat because of the pain..in othrwords I used different muscles to

ease the pain which made those muscles hurt. Eventually it went into my

upper back.

I had accupuncture and massages for it but it always came back. I bought

myself one of those power massagers and did something like trigger point on

the areas. It means that I kept the massager on the highest in that area for

a long time and often.I have not had this for about 4 months and I do not

want it back.

I am not telling you to go out and buy this. The symptoms are the same but

you may have something different. Just try to relax at this point and maybe

use something warm on the area.

cooky

rheumatic Help needed

Hi every-one

All weekend I have had a really horrible pain on the right side of my neck,

running from the bottom of my neck up to my ear and into my head, it feels

like I have lumpy blood running through my vein, if I apply pressure it

kinda feels a bit better, although now, it is all just aching. I know it

sounds weird, but it is hard to describe. I have also had a migraine or

headache all weekend. Does any one know what this might be? is it a new

symptom for me related to A.S? or something new?? I have tried looking on

Google but came up with nothing. So wondered if any one on this list was

unfortunate enough to suffer from this???

I would be grateful to hear from you if you have similar symptoms or know

what this might be :-(

Sallie

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

The LOST Ninja blog: Exclusive clues, clips and gossip.

[Guest guest]

How is your neck? Do you have any difficulty turning it or any

grinding/cracking sounds when you do? If it continues and you have RA, it

might be good to get your neck x-rayed.

rheumatic Help needed

> Hi every-one

>

> All weekend I have had a really horrible pain on the right side of my

> neck, running from the bottom of my neck up to my ear and into my head, it

> feels like I have lumpy blood running through my vein, if I apply pressure

> it kinda feels a bit better, although now, it is all just aching. I know

> it sounds weird, but it is hard to describe. I have also had a migraine

> or headache all weekend. Does any one know what this might be? is it a

> new symptom for me related to A.S? or something new?? I have tried

> looking on Google but came up with nothing. So wondered if any one on

> this list was unfortunate enough to suffer from this???

> I would be grateful to hear from you if you have similar symptoms or know

> what this might be :-(

> Sallie

>

>

>

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

> The LOST Ninja blog: Exclusive clues, clips and gossip.

>

>