»Ø¸´£º Re: Fw: We have a NEW MEMBER!! madonkaka

[Guest guest]

Dear Group,

Thank you for the warm welcome, I was busy reading all

those fascinating information sent by Sharon, thanks :

)

Let me introduce myself first, and please forgive my

poor English...My real name is Yanhong Ouyang, I am

Chinese, but you can call me Kaka. Although I really

don't like the experience of dealing with Devic's

disease, but after I was diagnosed in March this year,

I had to learn how to live with it.

I have been living in Australia for more than four

years, in Jan this year I developed strange symptom of

persistent vomiting, for nearly three weeks, I

couldn't eat anything. So I was admitted to hospital

in Canberra at the end of Jan, the doctor couldn't

find anything wrong with me. Then I was released after

five day's dripping in the hospital, I was still very

sick, couldn't eat at all, so I asked my housemate to

send me to Sydney my uncle's house. I was hoping maybe

real Chinese cooking would do me good. By the time I

lived in uncle's house, I developed more and more

symptoms such as dry coughing, low blood pressure,

itchy skin, tremor , etc. I visited GP regularly, but

he wasn't sure what was going on with me. Finally

because of urine retention on 2nd March, I was

admitted to a Sydney hospital, the doctor there was so

efficient, the next I had a MRI done, together with

other tests' results and they diagnosed me with Lupus.

So I had three Chemo therapies (once a week over three

weeks, and very small dosages each time). In fact, my

doctor was a bit suspicious at the Lupus diagnosis, my

blood sample was sent to a lab of Queensland Health,

and in 18th March, the result indicated that I am

positive for the Devic's disease(the NMO Ig Ab was

raised at 1:160). Therefore my diagnosis was revised

to neuromyelitis optica, the chemo

therapy(cyclophosphamide) was ceased, and Imuran was

started.

I was discharged from the hospital on 28th March,

fortunately I gained bladder function back! My parents

wanted me to go back to China to seek alternative

treatment, as the predinisolone I took was very very

bad(You all know it is such an evil drug!).

I came back to Beijing in April, went to see a Chinese

doctor(Traditional Chinese Medicine), he said that I

had the mildest case of Devic's. Actually, that is

true, I have no problem with my mobility, and so far

no vision attack, the only symptoms bothered me so

far is the Lhermitte's sign and the pins and needles

sensation of my right hand. Currently I am on both

western medicine and Chinese herbal medicine, I am

taking 100mg Imuran and 15mg Pred daily, and the

dosage of Pred is being tapered down. It is so hard to

tell whether the Chinese herbal medicine has helped or

not...At the beginning of May, I used to have numbness

feeling for my left arm, it normally lasts for 50

seconds, but now it seems that this symptom has

completed went away.

It is such a rare diesease, when I heard the

diagnosis, I had no idea what was that....and my life

was changed completely...It was kind of sad, I was

crying in the hospital nearly everyday. This hospital

experience was totally new for me, I used to be very

healthy and fit....

Thank goodness I find this group : ) Sorry I am a bit

sick of telling my story, it was daunting experience,

sometimes I wish I could forget it completely. Because

at this moment, I am doing very well, I hope that I

can share with you guys all the good things about

having Devic's disease, I mean...such as ...I don't

need to work at this moment : ) And got to see

Olympics in Beijing!!!! My friend told me 'hardship

makes us better people', I think that is very very

true!

Cheers for all,

kaka : )

--- katelloydkidz@...дµÀ:

> Welcome to the group madonkaka! We hope you find us

> to be a wonderful, supportive group, as we believe

> ourselves to be! hugs, Kate from NY----- Original

> Message -----From: Sharon Date: Saturday, June 28,

> 2008 11:30 amSubject: Fw: We have a NEW

> MEMBER!! madonkakaTo: Group > > Group: > please

> join> me > in extending a warm welcome to our

> newest member madonkaka?> here at MSersLife!?>

> > > madonkaka:?I know we all look > forward to

> getting to know you here on the group.?Please >

> feel free to > send an introduction as soon as

> you wish, ask any questions > you want, share >

> your experiences with all of us and just jump into

> the > conversations!  Sharon (group >

> creator/owner)> Challis?co-moderator) This> email

> is a natural hand made product. The slight

> variations in > spellingand grammar enhance its

> individual character and beauty > and in no way> are

> to be considered flaws or defects.?> > > >

> Please visit: http://www.bicycleman.comawesome guy,

> fantastic site. All types of bicyles, many

> recumbents; perfect for an MS Bike Tour!

> > begin:vcard

> n:Rothschild;kate

> fn:Kate Rothschild

> tel;cell:

> tel;home:914 762-8734

> tel;work:914 332-1943

> url:http://www.phil413.isagenix.com/

> org:http://www.allinonebusiness.net;Recharge Your

> Chi

> url:http://www.phil413.isagenix.com/

> adr:;;;Ossining;NY;10562;USA

> email;internet:katelloydkidz@...

> email;home;internet:katelloydkidz@...

> title:Associate and moving UP!

> version:2.1

> end:vcard

>

___________________________________________________________

ÑÅ»¢ÓÊÏ䣬ÄúµÄÖÕÉúÓÊÏ䣡

http://cn.mail.yahoo.com/

[Guest guest]

I not only believe in alternative therapy (I am a Reiki Master Teacher - haven't taught since I got sick 4 years ago) - I also see a herbalist and use herbs and vitamens. Akiba is reiki also.

I am allergic to so much that has been prescribed to me that my pharmacist/chemist keeps it on the computer.

A warm welcome to you - whether we are diagnosed or not - we still deal with a rebellious body with a mind of its own.

Fw: We have a NEW> MEMBER!! madonkakaTo: Group > > Group: > please> join> me > in extending a warm welcome to our> newest member madonkaka?> here at MSersLife!?> > > > madonkaka:?I know we all look > forward to> getting to know you here on the group.?Please >> feel free to > send an introduction as soon as> you wish, ask any questions > you want, share > > your experiences with all of us and just jump into> the > conversations!  Sharon (group > > creator/owner)> Challis?co-moderator) This> email> is a natural hand made product. The slight> variations in > spellingand grammar enhance its> individual character and beauty > and in no way> are> to be considered flaws or defects.?> > > > > Please visit: http://www.bicycleman.comawesome guy,> fantastic site. All types of bicyles, many> recumbents; perfect for an MS Bike Tour!> > begin:vcard> n:Rothschild;kate> fn:Kate Rothschild> tel;cell:> tel;home:914 762-8734> tel;work:914 332-1943> url:http://www.phil413.isagenix.com/> org:http://www.allinonebusiness.net;Recharge Your> Chi> url:http://www.phil413.isagenix.com/> adr:;;;Ossining;NY;10562;USA> email;internet:katelloydkidzoptonline (DOT) net> email;home;internet:katelloydkidzoptonline (DOT) net> title:Associate and moving UP!> version:2.1> end:vcard> __________________________________________________________ ÑÅ»¢ÓÊÏ䣬ÄúµÄÖÕÉúÓÊÏ䣡 http://cn.mail.yahoo.com/

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[Guest guest]

Hello Kaka! Welcome to the group! My name is Amy and I am from Michigan (a state in the upper midwest, U.S.) Wow, what a story, I'm glad they found out what it truly was so you can get proper treatment. I had to take a moment to look up Devic's Disease but it looks similar to MS, especially the treatment with steroids. I've had my battles with the dreaded prednisone too - all I have to say is you should feel better, not worse taking something for treatment. My cousin has Crohn's disease and she had to be talked out of throwing her prednisone in the garbage chute. But they say it works so what can you do. I constantly get Optic Neuritis with my MS flare-ups - it's annoying as ever. I think it's great you got to go to the Olympics Stadium! Did you grow up Beijing? I'm fascinated with the Forbidden City myself and I would love to see it. But I see Beijing has went all out for these games so it should be awesome. I hope you enjoy spending time with us! Amy -- Fw: We have a NEW> MEMBER!! madonkakaTo: Group > > Group: > please> join> me > in extending a warm welcome to our> newest member madonkaka?> here at MSersLife!?> > > > madonkaka:?I know we all look > forward to> getting to know you here on the group.?Please >> feel free to > send an introduction as soon as> you wish, ask any questions > you want, share > > your experiences with all of us and just jump into> the > conversations!  Sharon (group > > creator/owner)> Challis?co-moderator) This> email> is a natural hand made product. The slight> variations in > spellingand grammar enhance its> individual character and beauty > and in no way> are> to be considered flaws or defects.?> > > > > Please visit: http://www.bicycleman.comawesome guy,> fantastic site. All types of bicyles, many> recumbents; perfect for an MS Bike Tour!> > begin:vcard> n:Rothschild;kate> fn:Kate Rothschild> tel;cell:> tel;home:914 762-8734> tel;work:914 332-1943> url:http://www.phil413.isagenix.com/> org:http://www.allinonebusiness.net;Recharge Your> Chi> url:http://www.phil413.isagenix.com/> adr:;;;Ossining;NY;10562;USA> email;internet:katelloydkidzoptonline (DOT) net> email;home;internet:katelloydkidzoptonline (DOT) net> title:Associate and moving UP!> version:2.1> end:vcard> __________________________________________________________ ÑÅ»¢ÓÊÏ䣬ÄúµÄÖÕÉúÓÊÏ䣡 http://cn.mail.yahoo.com/