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LULU'S MAN

New member
Joined
May 16, 2008
Messages
7
Reason
PALS
Diagnosis
05/2008
Country
PRC
State
Beijing
City
Beijing
Hi
This is my first time so I hope I am doing this right.
I am an expat working in Beijing, China and I have just been DX with ALS by a local neurologist. Had all the tests etc. but health care here is not always firstrate so I made an appointment with another neurologist in Hong Kong for next monday. He is also chinese but Hong Kong is supposed to have better facilities. I don't know if this is the best thing to do or should I take some time off work and go to the states where there are ALS clinics?
 

Tall John

Active member
Joined
Mar 30, 2007
Messages
81
Reason
PALS
Diagnosis
06/2007
Country
US
State
ca
City
novato
What are your symptoms ?
 

LULU'S MAN

New member
Joined
May 16, 2008
Messages
7
Reason
PALS
Diagnosis
05/2008
Country
PRC
State
Beijing
City
Beijing
Muscle atrophy both arms. Started right hand. Muscle twitches all the time all over. Just tried to go swimming. Could not breathe in water. Weight loss. Still have mobility and no trouble swallowing but voice is getting weak.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Lulu's man. The trouble breathing in the water is something I had.Twitches too. Do you have weakness? HK probably has some good Neuro's but beware of any weird or off the wall treatments they might offer. Herbs and stem cell transplants will not cure ALS IF that is even what you have. Be very careful.
AL.
 

LULU'S MAN

New member
Joined
May 16, 2008
Messages
7
Reason
PALS
Diagnosis
05/2008
Country
PRC
State
Beijing
City
Beijing
Hi
I am just beginning this journey and it is helping to have somebody to talk to. I thought I was going to go crazy for awhile after I got the news but it is getting a bit better now.
Yes Muscle weakness in both arms and hands and right leg. Right side generally worse than left. Had some laryngeal spasms also.
Thanks for the reply. God Bless
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Lulu's man!
Sorry to hear about your symptoms away from home. May I ask you what part of the states you are from? What is your age? Sorry, I am being so nosey, but I am curious. Grampal is 100% correct, people, especially in that part of the continent will try to talk you into anything, but do not believe them. It's all a hoax. Godd luck to you LULU'S MAN, and God bless! Oh, and please keep us posted.

Irma
 

LULU'S MAN

New member
Joined
May 16, 2008
Messages
7
Reason
PALS
Diagnosis
05/2008
Country
PRC
State
Beijing
City
Beijing
Hi
I am 58 and originally from Oklahoma City but there are no family left there. If the neuro in HK confirms my diagnosis I plan to get back to the states as soon as possible. My wife has a sister in Houston so we will probably settle there. I work in the Oil industry so I may be able to transfer or take early retirement. Hopefully none of the above though and all this is a false alarm. Wish me Luck

Lulu's man
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hey man- we do wish you and Lulu luck! It would be good to be near family in any case during these stressful times.
 

mjk201

Member
Joined
May 10, 2008
Messages
29
Reason
Learn about ALS
Country
US
State
nj
City
bayonne
hey sorry to hear what your going thru. well get it taking care of and keep us posted. godbless and have a safe trip.
 

LULU'S MAN

New member
Joined
May 16, 2008
Messages
7
Reason
PALS
Diagnosis
05/2008
Country
PRC
State
Beijing
City
Beijing
Need some clinic info

Well I didn't make it to Hong Kong. I was going out the door and had one of my panic attacks. I wound up spending the morning in the hospital.
I talked to my boss and we decided it would be best if I went back to the states anyway.
I will probably go back to Houston.
I see there are several clinics in Houston. If anybody out there has any experience with clinics in Houston please let me know which one would be best to contact?
 

Icanmanz

Senior member
Joined
Jul 14, 2007
Messages
947
Reason
PALS
Country
Uni
State
Texas
City
Tomball
Hi Lulu's Man! You can try getting in touch with Linda Richardson. Her email address is as follows: [email protected] This lady is a sweetheart. Tell Linda that Rudy's Mom gave you her email. She knows who I am. Good luck and God bless!

Irma

Their phone number is 713-942-2572
 

mlkchung

New member
Joined
Sep 6, 2008
Messages
6
Reason
Loved one DX
Diagnosis
01/2000
Country
CHN
State
Hong Kong
City
Hong Kong
Hello,

I've been living in Hong Kong for about 11years now..my moms been struggling with MND for over 9 years here. My mom has been deteriorating quite quickly this past year. I'm usually quite optimistic with things but these few days have been so so so hard, my mom was admitted to ICU yesterday due to respiratory complications ...Was wondering if anyone was in the region...let me know...still haven't found a support group here.

Margaret
Hong Kong
 
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