Re: hypermobility of joints-ever hear of this?

[Guest guest]

Sandi, this is Carolyn. I myself have had JRA for 30+ years. I did not fit

into any " molds " of diagnosis either patterns. Your sweet daughter at 5 feet

tall and 100 pounds is not over weight. My Daughter is 5' tall and weighs 100

pounds...She looks wonderfully skinny to me! I live in Cleveland also and I

wonder who your Dr. is you saw at the Cleve. Clinic. There is a children's

doctor, Dr. Singstrom, I think that is his name. When I was finally diagnosed

at 17 (symptoms started around 7 years of age) my sed rate was only 12. A

bone scan showed the abnormal activity in my hands, feet. My swelling was off

and on. Maybe it is time for you to request a bone scan for your daughter.

Not everyone fits all the criteria in a book. The bone scan might help the

understanding of what is going on inside. You have very legitimate questions.

You both deserve answers. Good luck, Carolyn

[Guest guest]

First find a DR you like if you can. Second is your daughter has hypermobile

joints she will be able to make her thumb back to her wrist, or take her arms

behinds her back join them together and lift them over her head, as examples.

Straddles, back bends and splits are easy. My daughter has hypermoible

joints. When she straightens her arms they start to bend the other way at the

elbow. It is hereditary. Also the hypermobilty can cause arthritis. The DR is

right no diagnosis of JRA is usually made unless the joints are swollen fro 6

weeks. I hope this helps SHU

[Guest guest]

At one point I was also told my problem was hypermobile joints. While

I am " double-jointed " in some joints, only one doctor ever told me

that was my problem. My doctor now says that it may be a contributing

factor to the JRA, but really I just have arthritis and I shouldn't

even worry about the hypermobility, which like I said is only present

in some joints.

The most important thing is that your daughter like her doctor. There

is enough " yucky stuff " involved in this disease, without having to

go to a doctor you hate!

Elisheva

[Guest guest]

Sandi..sorry to hear what is going on. For one thing it sounds like this

doctor is trying to be superman and make his own decision...sorry but

doctors like him need smacked..maybe you can check and see about a shriners

hospital..i heard they are great! There is no need for your daughter to have

to go to a doctor who upsets her..she has enough to deal with and so do you!

I have heard of people being double-jointed but i never heard of anything

about arthrites being related.

I know about the cold..i live in pennsylvania. It is hard on Tabitha in the

winter time.

Good luck

karen(tab16..poly)

From: " mommytme " <mommytme2@...>

Reply-

Subject: hypermobility of joints-ever hear of this?

Date: Sat, 16 Feb 2002 17:28:08 -0000

Hi: This is Sandi, Ashli's mom, and have a question regarding a new

diagnosis we received this week. Alittle background...2 1/2 years

ago Ashli (7 1/2 at the time) was diagnosed with Pauci JRA in the

knees and ankles. At the time she had swollen and painful joints and

a sed rate of 25. JRA doctor put her on naproxen and when been on

medciation (different ones) over the last 2 1/2 years. Ashli is

doing fairly well, winter months in Ohio are always tough though.

Our medical insurance changed January 1st and had to change our JRA

doctor. We loved our old doctor but she recommended a JRA doctor at

the Cleveland Clinic and we went on Monday. The upshot of the

appointment is this doctor (who had no personality with Ashli and

proceeded to call her overweight and went into a 1/2 hour long

lecture on her weight. She may only be 10 but she's 5 feet tall and

weights 100 pounds. We have worked with her pediatrician on keeping

close eye on NO POP, NO SNACKS BETWEEN MEALS unless fruit, NO FAST

FOOD, etc. and never been told she was overweight. She's always been

a tall/big girl but her percentale always been in 99%). Anyways,

after a 5 minute examine this new doctor said he doesn't think Ashli

even has JRA that she has HYPERMOBILITY OF JOINTS, causing same

symptoms as arthritis and sometimes treated the same but not always.

Needless to say I left feeling lost, we're doing more blood work and

then he's considering taking her off all medication and see what

she's like. He said to officially be diagnosed with JRA you have to

have 6 weeks of swollen/painful joints and Ashli hasn't had that.

The reason is because she's always been on medication. I'm a little

lost. Been doing research on different symdromes/diseases that go

along with hypermobility of joints and not surprising Arthritis is

one. Can anyone help? My e-mail is MOMMYTME@...

God Bless,

Sandi A. (Ashli's Mom)

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[Guest guest]

Sandi-

Wow!! You must be totally confused -- and upset. I don't really know much

about hypermobility of joints, but it's hard to believe she could have been

treated all this time for jra when it wasn't that. The new Dr. sounds like a

jerk. I think you'd know if your daughter was overweight, and it certainly

sounds like she eats right. Get another opinion. Don't just accept what

this guy says. Why should you believe him over your old Dr? You definitely

need a dr. you and your daughter both trust and feel comfortable with. Keep

us posted. Hang in there.

Diane (, 2, pauci)

[Guest guest]

Sandi

sorry on my late reply been busy around here

this is ridiculous of what the doctor has said one of the rhuemy drs also

told melissa about her weight telling her to lose some and to be more ACTIVE

not only did she say that to melissa she also told my sister the same thing

my sister who is 300pds and carries it well the NERVE of a doctor to even

comment on weight is off the wall

i plainly told this doctor that its NOT melissa and weight but the medication

she had been put on that has made melissa gain weight

was only 79 pounds before we started Voltaren within a few months

she was 130pounds i was even concerned but her ped said not to worry its

medicated related and to tell you the truth looks good at 128 she

actually looks healthy i know the weight on the joints can cause problems

BUT dont starve a kid

a kids metabolism goes up and down

think the best advice i could give you is call your other doctor ASAP

maybe the doctor can do something to get yall back before this new doctor

goes to extreme

Robbin

ps

i switched doctors

[Guest guest]

Josh says he'd love to have hypermobile joints. If that's the same thing as double-jointedness. He doesn't, as far as we know, have any joints like that.

~ Georgina

Subject: Re: hypermobility of joints-ever hear of this?

[Guest guest]

I guess it is double-jointedness. When I extend my fingers fully,

they bend kind of backwards. That is, the joints can make an angle

the opposite way. Also my left thumb is really loose in the joint and

can pop in and out. But those are my only " loose " joints, I

think...other than that I've never been flexible, even when I was

younger (pre-JRA) and I was a gymnast! I can't do any of that fun

stuff, like touching my thumb to my wrist or putting my arms under my

legs and around my back (with the shoulders all popppy..ugh!).

lol

Elisheva

> Josh says he'd love to have hypermobile joints. If that's the same

thing as double-jointedness. He doesn't, as far as we know, have any

joints like that.

>

> ~ Georgina

>

> Subject: Re: hypermobility of joints-ever hear of this?