Hi, I'm new

[Guest guest]

Ron wrote:

" There is a blood test that can test for a " Rheumatoid Factor. " I don't know the

technical name of the test (perhaps someone else can help out here), but a

positive result indicates RA. A negative result doesn't necessarily rule out RA

however. In any case, I was floored by your osteopath's implicit assumption that

PA is not an inflammatory disease. I'm no doctor, but I've had this disease long

enough to know that PA is indeed an inflammatory disease, and that high sed

rates are usually typical during a PA flare-up. May I suggest that you consult a

rheumatologist rather than (or in addition to), your osteopath? "

Hi Ron & thanks

He didn't say that PA was *not* inflammatory, just that a lack of inflammation

didn't *rule out* PA. Of course he could have been wrong here, I don't know this

is why I am asking... if for example there is more than one kind of PA, one

inflammatory one not?

Ok so I'm being very slow here but why doesn't a low sed-rate rule out RA

already without needing to test for rheumatoid factor? (I'm sorry about this, I

have so much to learn)

Yes.. I am planning on seeing a rheumatologist as soon as I can, I have to go

back to my GP on Friday for a referral.

Can I just explain what happened, first off I went to my GP and he said it was

all in my head and refused to listen to me or refer me to anyone. At that point

we had no idea of PA or anything else really. So my mum took me to see an

osteopath who thought I might have PA and told me to go back to my GP for a

referral to a rheumatologist to see if it is that or not. I couldn't go directly

to a rheumy, you have to have a referral from your GP, and mine would not do so

as he didn't think there was a problem. I hope this makes sense.

Thanks for your help,

Rosie

[Guest guest]

In a message dated 10/30/2002 10:52:43 AM Eastern Standard Time,

crana@... writes:

> he said it was all in my head and refused to listen to me or refer me to

> anyone

Rosie - that happened to so many of us before being diagnosed. I was told

mine was PMS! I hope you insist on that referral to a rheumy and get

properly diagnosed and treated. If you don't get the referral, I would think

about switching primaries.

[Guest guest]

Hi Rosie,

I just wanted to let you know that my Rheumy has diagnosed me with

PA . But, It took quite awhile. My sed rates were only slightly

elevated. Xrays showed no bone deterioration. Inflamation was not

usually red, but swelling was obvious in the joints especially

sausage fingers. Interestingly enough, I experienced joint pain for

12-18 months prior to exhibiting any skin blotches. I had never had

any Psoriasis, and it wasn't until I started having skin blotches

that he was able to make & be confident with his diagnosis. Like

yourself, I have only minor nail pits.

Hope that helps, but everyone is different with this disease.

Stay well

>

> " Hi Rosie,

> I am sorry to hear that you may be joining us. A few

> things to remember this disease goes up and down.

> There are good days out there. If you have spacific

> questions you can always ask this group, there are so

> many knowledgable people here that can help.

> Good Luck,

> Charlie "

[Guest guest]

Rosie,

Hi, I'm sorry to hear that you are having a rough time right

now. It is often difficult in the beginning, doctors aren't always

right about things that are not thier specialty. Many of us hear

have been told things (by doctors) that are not accurate, sometimes

absurd. So we try to let each other know if something doesn't sound

right. Just because you have questions doesn't mean your slow, it is

difficult to find good info on PA, this place is a good place to ask

questions and you can search the archives for answears also. Good

luck. I hope you get to feeling better soon!

--Merribeth

[Guest guest]

wrote:

" The Sed Rate only shows that there is inflamation.

It has nothing to do with RA, PA etc...

I think that test (Sed Rate) is done just to make sure

you are not faking :-) "

Hi , thanks for your message.

so because I don't have inflammation (I talked to someone from the Arthritis

Research Campaign today, I asked her and she said it could be normal to have a

normal Sed-rate when you weren't having a flare, but I never get any

redness/swelling/heat)... does this mean PA isn't it?

I mean I can understand that if your PA had died down a bit/remission blood

work like sed rate would be normal. But I never have any signs of inflammation

at least those I know of e.g. red, hot, swelling, sausage digits. I think maybe

the osteopath just jumped on PA because of my fingernails. He said that if the

blood test was negative we were " scraping the barrel " in terms of causes of my

joint problems... I think that may have been it... on the other hand the

combination of joint pain + pitted nails does suggest PA I guess.

If anyone feels up to reading a boring list of someone else's problems I can

email in the specific problems/symptoms I have but hey we all have our own

problems without being bored by other people's!

[Guest guest]

:

>Rosie - that happened to so many of us before being diagnosed. I was told

>mine was PMS! I hope you insist on that referral to a rheumy and get

>properly diagnosed and treated. If you don't get the referral, I would think

>about switching primaries.

Thanks it's good to know I am not the only one who was dismissed out of hand!

I've got an appointment to see a different GP (mine's on holiday anyway) but at

the same practice tomorrow, I'll let you know how I get on..

Mum talked to her physiotherapist friend yesterday who said " Refuse to leave

unless you get a referral " - might chain myself to the examining table -

hehehehehehe. This GP is a woman & mum & I have this irrational idea that a

woman might be more sympathetic... hahhaa.... bet she's a proper evil dragon now

By the way before I go does anyone have any tips on picking a rheumy. I've been

told to go to the large Univ.hospital if possible as opposed to small general

hospital.... since I'm just 16 but it started before 16 I wasn't sure

paediatric/adult, the lady at Arthritis Research Campaign said that for

rheumatology usually you wouldn't see an adult rheumatologist before 18 not 16.

She said ideally a " transition clinic " but I don't think my area has one. There

is 1 paediatric rheumatology clinic & 1 rheumatologist in my area, do I want to

try and see her?

thanks for any help!

Rosiexx

[Guest guest]

Welcome. What program do you follow?

NH

Mommy to Abby Liz 10-25-94

Mommy to Anne 7-1-99

[Guest guest]

> I have been reading your posts for awhile now and decided to

> introduce myself.

I think you already did, under your *other* profile & email:

cat22fan2000 Melody (44/F)

Cat22Fan2000@...

Oklahoma

You joined on December 26th.

It appears you're now signed on to this list under 2 different

profiles and email addresses. You can add all email addresses to one Profile

under the Account Info link on the group's home page or your MyGroups page.

Welcome again.

Sue in NJ

[Guest guest]

> Hello,

> I just started taking Lexapro (10mg one daily) about a

> week and half ago.

(snip)

> I know that I have broken out on the sides of my face

> with acne/rash (or rash/bumps) and it is just on the

> side below the ears anf cheek area,

I've got that going on too... About the same amount of time on

the Lex as well.

[Guest guest]

It is very (Ok) to feel sad because she is not doing what a child of her (

Normal age) would be doing. But you will find she may not keep up in some areas

and in other field's surpass your expectations in her development and growth.

Beleive me when she does surpass expectations , you will cry like a baby then

too!! LOL,,, It's like a wild roller coaster ride with strange turns at times

but you always seem to come out crying with laughter with our kids. And they

are WORTH EVERY MINUTE OF THE PAIN, And HAPPINESS THEY LEAVE behind for US the

parents and those around them as they teach us the true meaning of

Unconditional love and Acceptance!! You are a Great grandma to be so accepting

and

devoted, And beleive me your time will be paid back in TRIFOLD!! Hang in

there!!

Nettie619

[Guest guest]

It is very (Ok) to feel sad because she is not doing what a child of her (

Normal age) would be doing. But you will find she may not keep up in some areas

and in other field's surpass your expectations in her development and growth.

Beleive me when she does surpass expectations , you will cry like a baby then

too!! LOL,,, It's like a wild roller coaster ride with strange turns at times

but you always seem to come out crying with laughter with our kids. And they

are WORTH EVERY MINUTE OF THE PAIN, And HAPPINESS THEY LEAVE behind for US the

parents and those around them as they teach us the true meaning of

Unconditional love and Acceptance!! You are a Great grandma to be so accepting

and

devoted, And beleive me your time will be paid back in TRIFOLD!! Hang in

there!!

Nettie619

[Guest guest]

and Joanie,

Myah, and are so blessed to have you for their moms.

>What I am trying to say is I think it is ABSOLUTELY normal to

> have mixed emotions, but beware showing your son/daughter-in-law those

> feelings, as they might feel as if " they " are making you feel

> sad/disappointed.

Thank you for pointing this out to me, . I hadn't actually thought

about Jon and feeling they had disappointed their parents.

Jon seems kind of down and gloomy to me a lot of the time since he's been

home. He doesn't have the animated, eager attitude he used to have. He's

interested in things and laughs when something's funny but when he's not

laughing he looks like he's chewing ground glass. He is the epitomal adoring

daddy but I wonder how much disappointment he's feeling or maybe imagining

we're feeling. He was anticipating a varsity athlete with an IQ in the

stratosphere and it took him a while to adjust his expectations to maybe not

having that. I think I unwittingly and clumsily have said things now and

then that hint that I notice Abbie is " behind " in some areas. goes on

and on about how much faster Abbie is progressing since her surgery....

which, now that I think of it, sounds kind of like a roundabout way of

saying, " She's catching up to where she 'should' be, see? "

Joanie -- your experience when " passes " in development -- I

think Jon and will be having similar experiences soon..... 's

brother is expecting his wife to have a baby any minute. Jon and

haven't been around other babies much since Abbie was born, but Abbie and

her little cousin will be together a lot.

How in the world do you learn not to compare, to just see individuals as

they are and not measure them beside other individuals? I have always been

bad at that. I have always wanted to be, and wanted my children to be,

smarter, prettier, stronger, faster than everyone else. I gloated inwardly

if they sat, walked, read, or teethed earlier than someone else's child.

I really need to learn that my family and I are no better and no worse than

anyone else. Each of us is who we are.

Amazing how a 10-pound little person can be changing a whole family's

perspective on what's important.

But I still wonder if people recognize right away that Abbie has DS.... and

if they noticed her Noxzema-blue eyes and incredibly long eyelashes. What

they register is surprise when they ask how old she is and are told, " 5

months. " She's the size of a

one-month-old and soft and relaxed like a baby that age. Not " floppy, " just

soft.... like a kitten compared to a puppy. Holding other babies recently,

I've thought, " Abbie cuddles more. " This feels lovely but it's because she

doesn't support herself well, which hurts me. I think of her has being a lot

younger than she is, which feels better.

I hope I don't sound bitter. I was so pleased with myself at first because I

felt that Abbie's DS didn't matter.... it was just something she had, like

blue eyes and brown hair. But as she gets older I'm finding I need help in

understanding and accepting after all. What a difficult realization that is.

Ellie, learning in Western land

[Guest guest]

and Joanie,

Myah, and are so blessed to have you for their moms.

>What I am trying to say is I think it is ABSOLUTELY normal to

> have mixed emotions, but beware showing your son/daughter-in-law those

> feelings, as they might feel as if " they " are making you feel

> sad/disappointed.

Thank you for pointing this out to me, . I hadn't actually thought

about Jon and feeling they had disappointed their parents.

Jon seems kind of down and gloomy to me a lot of the time since he's been

home. He doesn't have the animated, eager attitude he used to have. He's

interested in things and laughs when something's funny but when he's not

laughing he looks like he's chewing ground glass. He is the epitomal adoring

daddy but I wonder how much disappointment he's feeling or maybe imagining

we're feeling. He was anticipating a varsity athlete with an IQ in the

stratosphere and it took him a while to adjust his expectations to maybe not

having that. I think I unwittingly and clumsily have said things now and

then that hint that I notice Abbie is " behind " in some areas. goes on

and on about how much faster Abbie is progressing since her surgery....

which, now that I think of it, sounds kind of like a roundabout way of

saying, " She's catching up to where she 'should' be, see? "

Joanie -- your experience when " passes " in development -- I

think Jon and will be having similar experiences soon..... 's

brother is expecting his wife to have a baby any minute. Jon and

haven't been around other babies much since Abbie was born, but Abbie and

her little cousin will be together a lot.

How in the world do you learn not to compare, to just see individuals as

they are and not measure them beside other individuals? I have always been

bad at that. I have always wanted to be, and wanted my children to be,

smarter, prettier, stronger, faster than everyone else. I gloated inwardly

if they sat, walked, read, or teethed earlier than someone else's child.

I really need to learn that my family and I are no better and no worse than

anyone else. Each of us is who we are.

Amazing how a 10-pound little person can be changing a whole family's

perspective on what's important.

But I still wonder if people recognize right away that Abbie has DS.... and

if they noticed her Noxzema-blue eyes and incredibly long eyelashes. What

they register is surprise when they ask how old she is and are told, " 5

months. " She's the size of a

one-month-old and soft and relaxed like a baby that age. Not " floppy, " just

soft.... like a kitten compared to a puppy. Holding other babies recently,

I've thought, " Abbie cuddles more. " This feels lovely but it's because she

doesn't support herself well, which hurts me. I think of her has being a lot

younger than she is, which feels better.

I hope I don't sound bitter. I was so pleased with myself at first because I

felt that Abbie's DS didn't matter.... it was just something she had, like

blue eyes and brown hair. But as she gets older I'm finding I need help in

understanding and accepting after all. What a difficult realization that is.

Ellie, learning in Western land

[Guest guest]

Stefanie,

I did read something about teaching young children with DS to read, as an assist

to helping them speak. It seemed in this study that they learned sight words

more easily than spoken ones, and reading the words helped them say them and

even construct their sentences correctly (using verbs, " The dog is running, "

rather than " Dog run. " I'll look up that website.

Thanks so much for your encouraging thoughts on the sweetness of ....

and Abbie too.

Ellie

[Guest guest]

Stefanie,

I did read something about teaching young children with DS to read, as an assist

to helping them speak. It seemed in this study that they learned sight words

more easily than spoken ones, and reading the words helped them say them and

even construct their sentences correctly (using verbs, " The dog is running, "

rather than " Dog run. " I'll look up that website.

Thanks so much for your encouraging thoughts on the sweetness of ....

and Abbie too.

Ellie

[Guest guest]

I hear ya, I have 4 kids, My oldest 15 michael , walked and talked at 9 mths

old. <My 12 year old daughter Jen didnt walk til 15 mths, very spoiled!!

na my 6 year old didnt want to walk til 14 mths and talked at 12 mths, and

Last but not least my dearest 10 who just so happens to have ds and legally

blind, with cataracts, communication disorder, and celiac ,and now sleep

apnea, didnt walk til 3 years of age ,,, very spoiled,,lol--- Talked at age 2

pretty well. So they all do have their own time they do things. And dont care

how

much we want them to do things any earlier-lol.. But they all will get where

they are suppose to be. Nettie619

[Guest guest]

I hear ya, I have 4 kids, My oldest 15 michael , walked and talked at 9 mths

old. <My 12 year old daughter Jen didnt walk til 15 mths, very spoiled!!

na my 6 year old didnt want to walk til 14 mths and talked at 12 mths, and

Last but not least my dearest 10 who just so happens to have ds and legally

blind, with cataracts, communication disorder, and celiac ,and now sleep

apnea, didnt walk til 3 years of age ,,, very spoiled,,lol--- Talked at age 2

pretty well. So they all do have their own time they do things. And dont care

how

much we want them to do things any earlier-lol.. But they all will get where

they are suppose to be. Nettie619

[Guest guest]

Thank you, thank you for all your wonderful support. I've been feeling guilty

about my non-positive feelings and you guys are really helping.

- Marking the surgery as the baby's birth date makes sense. Abbie was in a

way just surviving up until then. Her surgery was a month ago (June 5) and to me

she seems like a month-old baby. That makes a lot of sense.

Actually, cognitively she's more like a 3 or 4-month old. But in public she sort

of collapses, won't look at new people or smile or pay attention. I think maybe

she's overwhelmed. Also, a friend of mine pointed out that for Abbie's whole

life, strangers for the most part have held her down, started IV's, drawn blood,

made her lie still for EKG's, measured and weighed her, and in general not been

good news. Maybe " regressing " when introduced to new people is her way of

saying, I don't want any more people harassing me. State your business and then

we'll talk.

I need to stop thinking, babies do xyz at such-and-such an age. Every baby is on

her own time. Our other granddaughter didn't walk until about 15 months, while

her older brother had walked at 10 months. What did we do? Nothing. We figured

she'd walk when she walked. She's almost 5 now and walks just fine :-)

Ellie

[Guest guest]

Thank you, thank you for all your wonderful support. I've been feeling guilty

about my non-positive feelings and you guys are really helping.

- Marking the surgery as the baby's birth date makes sense. Abbie was in a

way just surviving up until then. Her surgery was a month ago (June 5) and to me

she seems like a month-old baby. That makes a lot of sense.

Actually, cognitively she's more like a 3 or 4-month old. But in public she sort

of collapses, won't look at new people or smile or pay attention. I think maybe

she's overwhelmed. Also, a friend of mine pointed out that for Abbie's whole

life, strangers for the most part have held her down, started IV's, drawn blood,

made her lie still for EKG's, measured and weighed her, and in general not been

good news. Maybe " regressing " when introduced to new people is her way of

saying, I don't want any more people harassing me. State your business and then

we'll talk.

I need to stop thinking, babies do xyz at such-and-such an age. Every baby is on

her own time. Our other granddaughter didn't walk until about 15 months, while

her older brother had walked at 10 months. What did we do? Nothing. We figured

she'd walk when she walked. She's almost 5 now and walks just fine :-)

Ellie

[Guest guest]

Ellie,

Welcome to the list! Hey I felt sad all over again just reading your post-

but as my daughter amanda calls them I was sheding happy tears. My mother and

my dad (when he was alive) adore who is their grandchild.

but as much as my mom adores her, she too often feels sad or feels bad for

her. I get sad when I think too much- but has done so much with her

life- shes an actor (shes been on Law and Order), a dancer, a great reader, a

writer, pretty funny and a very typical almost teenager who loves to listen to

her

music on her cd player!

Abbie is lucky to have you so close and you will get so much pride and love

from her!

~ Mom to 12 DS and Diabetes Type 1 and 9 NY

[Guest guest]

In a message dated 7/4/2003 11:58:15 PM Eastern Daylight Time,

ellirnr@... writes:

> . But sometimes I feel sad when she acts more like a 5-week-old or even

> 5-day-old baby than 5 months... she's farther ahead in some ways than in

others,

> maybe like a " typical " 3-month-old (whatever that is but that's about how

> old she seems to me). In a family that's always somehow taken pride in kids

> doing things early (as though it reflected some kind of credit on the

parents),

> I'm getting a major lesson in accepting and loving people as they are, all

> people, including adults who don't do everything I wish they would. Really, I

> would not change a single thing about Abbie even if it were possible. I just

> feel sad and frustrated sometimes.

> <snip>

>

> Anyway, I'm looking for friends to tell me I'm OK to feel sad sometimes even

> though I love Abbie so much she feels like my own daughter rather than my

> granddaughter, and I have so much to be grateful for in her successful cardiac

> surgery and her undeniable cuteness and her unbelievable loveableness.

>

Ellie,

Welcome to the list and congratulations on the birth of your granddaughter!

Remember that kind of surgery on any little baby will set them back quite a

bit!

You think she's great now? JUst wait till she develops her little

personality! You won't believe what one small special child will do to your

heart

string! The disappointment you feel now will be overshadowed by the pride

you'll

feel at what she accomplishes and how hard she works for it.

Kathy, Liam's mom( 5)

[Guest guest]

also has translocation 14 and 21. Jeanette

[Guest guest]

Tessa,

So glad that you found someone! Please keep the group informed of

your progress. God bless you!

Deb in Tulsa

> I was diagnosed approximately 5 months ago with candida. I had been

> sick for 20 years before I found a doctor. I saw alot of doctors,

but

> they didn't know what was wrong and gave me antibiotics, that

> certainly helped Ha Ha. My chiropractor, Dr. Greg, felt I needed to

> see a Chronic Disease Doctor he new, and he sent me to Dr. E. When

I

> saw Dr. E I was unable to walk without falling, I had slurred

speech,

> no short term memory. I couldn't even remember my age or telephone

> number. I was terrified and told my husband I felt like I was

dying.

> Dr. E said the yeast had invaded my brain. He started me on

Hydrogen

> IV's, and Nizoral, Thymus, Sulfur Drug (I had two infections in my

> intestines),I'm on the candida diet(I'm sure we all know what that

> is). I'm on probiotics, and the list goes on. I now can walk, I get

> dizzy, but I don't fall, Yeah! My vision is improving, my memory is

> some better, but still not great. Dr. E also found I have Chronic

> Epstein Barr, 's Syndrome and some other things that I can't

> remember right now, lousy memory. My husband says the one great

thng

> about it is I can't remember when he does something that makes me

> mad. I could make notes to refer to, just kidding! I saw Dr. Greg

> the other day and he said I look much better. He said the first

time

> he saw me he was very concerned. He felt that I wouldn't live much

> longer. Thank goodness Dr. Greg and Dr. E came into my life. It

took

> me 20 years to find them. It was a long road. Well, I guess I'll

quit

> rambling and forgive the horrible grammar and punctuation. It's one

> of those things I have trouble remembering. Thanks for reading

this,

> and good luck to all. Much love, Tessa

[Guest guest]

WELCOME TO THE GROUP.

THIS IS A GOOD PLACE TO COME AND SHARE WHAT IS GOING ON WITH YOUR

CHRONIC PAIN ISSUES.I HAVE A RUPTURED DISK IN MY NECK AT THE C-5

LEVEL AS WELL AS BULGING DISKS AT THE L4-L5 AREA. I FIRST THOUGHT

THAT I HAD A RUPTURED DISK IN THE L4=5 AREA ,BUT IT ISN'T.{THANK

GOODNESS IT'S NOT RUPTURED} SO,INSTEAD OF THE PROSPECT OF 2

FUSIONS ,I AM ONLY FACING 1{IN MY NECK}. I HOPE THAT YOU WILL FIND

THIS GROUP TO BE A GOOD PLACE FOR YOU TO COME AND SHARE ,AND IF THE

NEED SHOULD ARISE,TO VENT YOUR FEELINGS, AND FRUSTRATIONS THAT COME

WITH CHRONIC PAIN ISSUES.

TAKE AS BEST CARE AS YOU CAN,AND,ONCE AGAIN,WELCOME TO THE GROUP

LARRY{GULLEYWASHER6869}

In neck pain , " lacinata " <lacinata@y...>

wrote:

> Hi folks!

> It's nice to have a forum where people know and understand chronic

> back pain, so thank you!

> I have a herniated L5/S1 accompanied by the classic can't feel

parts

> of my foot and my achilles tendon doesn't work too well etc, etc.

> I'm wondering whether or not I will ever recover sensation in my

leg

> and in my toes. I'm sure everyone here knows that getting a

straight

> answer out of any health care practitioner is like pulling teeth!

My

> MD referred me to an orthopedic surgeon, but I'd like to avoid

> surgery, if at all possible. How much sustained damage can nerves

> take and still regenerate?

> Thanks for any thoughts or info!

> and ps: if any one has any great books or movies to recommend, I'd

> much appreciate it. I can't work so I'm always seeking

> entertainment!

[Guest guest]

Hello Annie,

We are glad to hear from you. Welcome to the Blood type O way of eating. We

will be glad to help in any way we can. There are also others from Canada in

this group, so if there are products that have a different name in Canada

than here, I'm sure they will be glad to let you know. We are all glad to

help answer any questions you may have, so just remember no question is a

dumb question if you don't know the answer or are confused. Each of us

started out new to this way of eating at one time or another.

Hi, I'm new

> Hi everyone,

>

> I'm Annie from northern Canada. I went to a naturopath this past week and

discovered that I'm allergic to wheat. She advised me to get Dr. D'amado's

book on blood typing (which I did) but I'm looking for support from others

who are going this route.

>

> Hoping to get to know you all as I learn about this different way of

eating.

>

> Annie

>

>

>