Update - urgent help on still's disease &my brother

[Guest guest]

Life is so vulnerable, it can be attacked in so many

ways, disease, terrorist(what happend in New York

today shook my mind and thought), if there are more

people in this world have symphathy and compassion

about others, life can be so much better and

easier....

Thank you everybody for your help and kindness

responding to my brother's illness, there are always

warm_hearted people in this world do care about

others.

I’ve summarized the documents I received from my

family and following is the detail of how this

happened and how my brother was treated and diagnosed.

Aug 16th --- Started having sore throat, at night

fever at 39.5C (103.1F).

Aug 17th --- Had IV in hospital, Doctor used

antibiotics, the name is Cephazolin

Aug 18th --- Same as Aug 17th, fever went down

Aug 20th --- Feel normal, played basketball, and slept

with Air conditioner and Fan on.

Aug21th ----Started muscle pain from knee down, no

pain in joint.

Aug23th ----Fever went up to 39.5C(103.1F) again, much

severe muscle pain from knee down.

had IV again in hospital. Used antibiotics: Cephazolin

Aug 24th ---- Antibiotics again, no fever, but muscle

in same area was very painful

Aug 28th ---- Had fever again, could not walk due to

muscle pain in legs

Aug 29th ---- Hospitalized. Started IV again with

another kind of antibiotics :Erythromycin, no cure on

muscle pain.

Blood test result on that day:

HB: 130g/L ;RBC :4.5x1012/L; WBC: 28.4x109/L, N: 0.85,

L: 0.15

Aug 30th ---- Fever at 37C-38C(99F-100F), more muscle

pain from knee down

Blood test result on that day:

HB: 130g/L ;RBC :4.6x1012/L; WBC: 21x109/L, N: 0.85,

L: 0.15

Aug31th ---- Ultrasound checked internal organ, liver,

spleen, kidney are all normal. Had same antibiotics,

continue muscle pain in legs area., low fever, found a

node on left arm, painful if press it.

Sep 1 to 4th -----Continue with

antibiotics(Erythromycin), have low fever every night

after 10:00pm. On the 1st, found another node on left

arm, painful.

Sep 3 to 4 th ----Started prednisone, 5gm, 3 times a

day with Vitamin B.

Blood test on Sep 3th:

ASO negative, RF negative. Sed-rate 55. Internal

organ is normal.

WBC :13.5x109/L; RBC: 4.25x1012; HGB: 131S/L;

HCt:0.408; MCV:96.0 FL;MCH:30.8 PS;MCHC:321 S/l;PLT:

252x109/L; LYM%: -0.135; MXD%:+0.239, NEUT%:0.626;

LYM#:1.8x109/L; MXD#:3.2x109/L;NEUT#:8.5x109/L; ESR:55

Urine test on Sep 3th:

GLU:negative; BIL: negative; KET: negative;SG:

1.025;ph:5.5;PRO:negative; LEU: Negative

Sep 5th ----- Changed antibiotics to back to

Cephazolin, stopped taking prednisone, started fever

at 38.6C at night. After taking prednisone again,

muscle pain was relieved.

Blood test for Heart:

CK 29 U/L 24-196

HBDH 102 U/L 72-182

LD 107 U/L 114-240 LOW

AST 38 U/L 0-37

Doctor has mentioned on that day, he may has

Wissler_Fanconi Syndrome (Still’s disease)

They are not sure.

Sep 6th ------ Continue with antibiotics and

prednisone. 40gm everyday. Node is getting smaller, no

pain.

Blood test for Heart

CK 49 U/L 24-196

HBDH 187 U/L 72-182

LD 186 U/L 114-240 LOW

AST 36 U/L 0-37

Sep 7th, continue with antibiotics and prodesone,40gm.

Node disappear., no fever, no muscle pain from leg.

Continue on prodesone 40 gm daily as of today.

On doctor’s note, I did see red color rashes in his

arms and legs (nothing at trunk). My brother had

Psoriasis ( a skin disease) for about 10 years, he

always had red color rashes in his those area due to

this skin disease, they are not sure if that’s

anything new.

As of last night, My family and my brother have get on

the bus to Bejing, hopefully, they can find doctors

over there giving more certain answer. Again, since

Still’s disease is very rare, I am hoping people in

United States can give us some consultation too

whether he really has this. Or if anybody in China

knows which doctor has experience in diagnosing such

problem or know any good Rheumatologist, your help

will be highly appreciated. In addition, if any of the

patient can tell us some information as to what he

should be cautious about during the trip, that would

be very valuable to us too. I currently live 30 miles

south of San Francisco, California. I have not had any

luck so far in this area to find any doctor willing to

take a look at his documents without asking bringing

him in to their offices(which is almost impossible in

our case since he is in China). I am hoping there are

nice people in these newsgroup will help….

God bless

Lin

__________________________________________________

[Guest guest]

Dear Lin,

Thank You for sharing your brothers experience with us. It does sound a lot

like Sills but I know it can be hard to diagnose.

I know the Stills website has some valuable info on tests that can be done

that can maybe help your brothers Doc's figure out if it is Stills or not.

I believe it is a process of elimination. The Docs have to rule out all

other possible diseases that may have the same symptoms.

The symptoms do seem to fit and not all Stills patients get a rash. Each

Stills case is so different yet they definitely have similarities. He

doesn't seem to have the joint pain. Of course this still may come later.

Of course I am hoping it doesn't.

The disease is Systemic so I believe it can potentially affect any part of

the body. It doesn't sound like he has any organ involvement. Again some

patients may not experience this or he is yet to experience this. Again I

hope he doesn't.

It still maybe to early in his disease to know what other symptoms make

come. I know how difficult this must be for you. It can be so challenging

to find a good Doc in some places in the US never mind China. This is not

meant to discourage you unfortunately it is just a terrible reality. Know

that all of this info is from my own experience with this disease (22+

years) and my own opinion.

My heart goes out to both you and your brother. I wish that I could be of

more help. Know that your family is in my thoughts and prayers. Keep us

posted on his condition. If it turns out your brother has something other

then Stills I hope you will consider continuing to be a part of our group.

I Wish You and Your Family the Best!

Love,

jatw@...

Update - urgent help on still's disease & my brother

> Life is so vulnerable, it can be attacked in so many

> ways, disease, terrorist(what happend in New York

> today shook my mind and thought), if there are more

> people in this world have symphathy and compassion

> about others, life can be so much better and

> easier....

>

> Thank you everybody for your help and kindness

> responding to my brother's illness, there are always

> warm_hearted people in this world do care about

> others.

>

> I've summarized the documents I received from my

> family and following is the detail of how this

> happened and how my brother was treated and diagnosed.

>

> Aug 16th --- Started having sore throat, at night

> fever at 39.5C (103.1F).

>

> Aug 17th --- Had IV in hospital, Doctor used

> antibiotics, the name is Cephazolin

>

> Aug 18th --- Same as Aug 17th, fever went down

>

> Aug 20th --- Feel normal, played basketball, and slept

> with Air conditioner and Fan on.

>

> Aug21th ----Started muscle pain from knee down, no

> pain in joint.

>

> Aug23th ----Fever went up to 39.5C(103.1F) again, much

> severe muscle pain from knee down.

> had IV again in hospital. Used antibiotics: Cephazolin

>

>

>

> Aug 24th ---- Antibiotics again, no fever, but muscle

> in same area was very painful

>

> Aug 28th ---- Had fever again, could not walk due to

> muscle pain in legs

>

> Aug 29th ---- Hospitalized. Started IV again with

> another kind of antibiotics :Erythromycin, no cure on

> muscle pain.

> Blood test result on that day:

> HB: 130g/L ;RBC :4.5x1012/L; WBC: 28.4x109/L, N: 0.85,

> L: 0.15

>

> Aug 30th ---- Fever at 37C-38C(99F-100F), more muscle

> pain from knee down

> Blood test result on that day:

> HB: 130g/L ;RBC :4.6x1012/L; WBC: 21x109/L, N: 0.85,

> L: 0.15

>

> Aug31th ---- Ultrasound checked internal organ, liver,

> spleen, kidney are all normal. Had same antibiotics,

> continue muscle pain in legs area., low fever, found a

> node on left arm, painful if press it.

>

> Sep 1 to 4th -----Continue with

> antibiotics(Erythromycin), have low fever every night

> after 10:00pm. On the 1st, found another node on left

> arm, painful.

>

> Sep 3 to 4 th ----Started prednisone, 5gm, 3 times a

> day with Vitamin B.

>

> Blood test on Sep 3th:

> ASO negative, RF negative. Sed-rate 55. Internal

> organ is normal.

> WBC :13.5x109/L; RBC: 4.25x1012; HGB: 131S/L;

> HCt:0.408; MCV:96.0 FL;MCH:30.8 PS;MCHC:321 S/l;PLT:

> 252x109/L; LYM%: -0.135; MXD%:+0.239, NEUT%:0.626;

> LYM#:1.8x109/L; MXD#:3.2x109/L;NEUT#:8.5x109/L; ESR:55

>

> Urine test on Sep 3th:

> GLU:negative; BIL: negative; KET: negative;SG:

> 1.025;ph:5.5;PRO:negative; LEU: Negative

>

> Sep 5th ----- Changed antibiotics to back to

> Cephazolin, stopped taking prednisone, started fever

> at 38.6C at night. After taking prednisone again,

> muscle pain was relieved.

> Blood test for Heart:

> CK 29 U/L 24-196

> HBDH 102 U/L 72-182

> LD 107 U/L 114-240 LOW

> AST 38 U/L 0-37

>

> Doctor has mentioned on that day, he may has

> Wissler_Fanconi Syndrome (Still's disease)

> They are not sure.

>

> Sep 6th ------ Continue with antibiotics and

> prednisone. 40gm everyday. Node is getting smaller, no

> pain.

> Blood test for Heart

> CK 49 U/L 24-196

> HBDH 187 U/L 72-182

> LD 186 U/L 114-240 LOW

> AST 36 U/L 0-37

>

> Sep 7th, continue with antibiotics and prodesone,40gm.

> Node disappear., no fever, no muscle pain from leg.

>

> Continue on prodesone 40 gm daily as of today.

>

> On doctor's note, I did see red color rashes in his

> arms and legs (nothing at trunk). My brother had

> Psoriasis ( a skin disease) for about 10 years, he

> always had red color rashes in his those area due to

> this skin disease, they are not sure if that's

> anything new.

>

> As of last night, My family and my brother have get on

> the bus to Bejing, hopefully, they can find doctors

> over there giving more certain answer. Again, since

> Still's disease is very rare, I am hoping people in

> United States can give us some consultation too

> whether he really has this. Or if anybody in China

> knows which doctor has experience in diagnosing such

> problem or know any good Rheumatologist, your help

> will be highly appreciated. In addition, if any of the

> patient can tell us some information as to what he

> should be cautious about during the trip, that would

> be very valuable to us too. I currently live 30 miles

> south of San Francisco, California. I have not had any

> luck so far in this area to find any doctor willing to

> take a look at his documents without asking bringing

> him in to their offices(which is almost impossible in

> our case since he is in China). I am hoping there are

> nice people in these newsgroup will help..

>

>

>

> God bless

>

> Lin

>

>

> __________________________________________________

>