RE: diagnosis

January 18, 2008

Debbie,

Sounds like you are dealing with a lot. Along with Still's, I have Vasculitis

which is an autoimmune disease as well that affects your blood vessels and can

cause poor circulation. I have only had a few flares with it, but when I do, I

get terrible leg ulcers that are so painful I can barely walk. Not sure if

that's what you're dealing with, but that's my experience.

Hope you feel better soon,

Gail (KY)

Debbie Parfitt wrote:

I was diagnosed 25 years ago with stills but after a trip to the rhu

dept today am now confused they had many different diagnosis for it

and said they could not be sure which i have juvenile rumatoid

arthritis, stills or juvenile idopatic arthritis. I was 10 years old

when i first had problems and they have never had much luck in

controlling the disease most of my joints are badley damaged and i

still get the high temps rash and swelling which makes me think it is

stills. So far i have had bilateral hip replacements ankle fusion

left elbow replacement and my knees are now at the stage where

walking is imposible and i can only just weight bare. Today they

aggreed to give me a secound course of ritiximab which did help last

time(until funding was withdrawn) apparently as i have already had a

course they wll fund me but they are not funding any new patients

locally. I live in Norwich Norfolk UK with my parents who help me

with day to day care. The main problems i have at the moment are

sleeping and also i have a nasty leg ulcar which won't heel(had a

skin skin graft 11/07 but was hold yesterday this has not worked so

am back to square one) has anyone had any problems with circulation

and found any answers anything which i can do to help as replacement

surgery is out untill i have heeled my leg and i am not getting any

more mobile untill they do my nee replacemnts

sorry for going on but had a couple of bad days felt like i am

hitting my head up against a brick wall

thanks for listening and i hope everyone has a nice weekend

debbie uk

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

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January 18, 2008

Debbie:

I apologize for taking so long to chat with you. Sounds as though

you've been through the mill, honey but I'm glad you found us.

I'll be honest, the only thing I know when it comes to ulcers on the

legs is through my father with the water blisters he gets due to

diabetes and water retention. They do, however, break open and then

it's absolutely impossible until that thing heals. The doctors put

something on him called an Uni-boot. It keeps the swelling down a

bit and actually aids in healing. I believe it's an old fashioned

way of doing things but at this point it might be an idea for you.

Talk with the doctor, you never know.

I may have misunderstood but are you still without a devinative

diagnosis as far as the Still's goes?

Now, go rest honey. Please give Mom and Dad a hug and take care and

be well.

Ellen

January 18, 2008

Debbie,

I am so sorry you are having such a hard time. I don't know what to do to

help heal your leg. I just want you to know that I will be thinking about

you and praying for you.

, Texas, U.S.A.

> I was diagnosed 25 years ago with stills but after a trip to the rhu

> dept today am now confused they had many different diagnosis for it

> and said they could not be sure which i have juvenile rumatoid

> arthritis, stills or juvenile idopatic arthritis. I was 10 years old

> when i first had problems and they have never had much luck in

> controlling the disease most of my joints are badley damaged and i

> still get the high temps rash and swelling which makes me think it is

> stills. So far i have had bilateral hip replacements ankle fusion

> left elbow replacement and my knees are now at the stage where

> walking is imposible and i can only just weight bare. Today they

> aggreed to give me a secound course of ritiximab which did help last

> time(until funding was withdrawn) apparently as i have already had a

> course they wll fund me but they are not funding any new patients

> locally. I live in Norwich Norfolk UK with my parents who help me

> with day to day care. The main problems i have at the moment are

> sleeping and also i have a nasty leg ulcar which won't heel(had a

> skin skin graft 11/07 but was hold yesterday this has not worked so

> am back to square one) has anyone had any problems with circulation

> and found any answers anything which i can do to help as replacement

> surgery is out untill i have heeled my leg and i am not getting any

> more mobile untill they do my nee replacemnts

>

> sorry for going on but had a couple of bad days felt like i am

> hitting my head up against a brick wall

>

> thanks for listening and i hope everyone has a nice weekend

>

> debbie uk

>

--

Maloney

10009 Stoneleigh Drive

Benbrook, TX 76126

Home

Cell

January 18, 2008

Debbie,

If you are still having the rash and fevers then I am not sure what else it

could be unless you test positive for Lupus. Sure sounds like Still's

disease and a tough case of it at that.

Did they give you any idea as to what it might be if is not Still's disease?

If not, I would pin them down and say well what else fits these symptoms

then?

You have had it tough and you have no need to apologize. Support is what

this group is about. My symptoms are nowhere near yours and I complain all

the time. The people in this group are the few people in this world that

can really understand and truly sympathize with you. I'm glad you have

your parents to help you.

Please, post any time you are feeling down and let people know. Expressing

it to people that understand it really helps.

Regards,

Darv

Darvin Atkeson

http://www.liquidmoonlight.com

From: Stillsdisease [mailto:Stillsdisease ]

On Behalf Of Debbie Parfitt

Sent: Friday, January 18, 2008 1:01 PM

To: Stillsdisease

Subject: diagnosis