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salma

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Joined
May 17, 2006
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17
Reason
PALS
State
Sind
City
Karachi
Hello to all,
my father has been suffering from ALS his mobility and speech are lost... but now bsince 4 months i feel some changes in mine self ...... i am 27 years old and i have pain n weakness in left leg... my left shoulder muscel has tough pain i cant it move freely when i move it pain start... my muscles or nerves are vibrate i dont know the exactly term but vibrations of nerves inside body which is visible when it vibrates. duration some time 3 sec some time 5 sec. but in left hand a space b/w thumb n index finger here a particular nerve vibrates every time from 3 months i have been seening non stop vibrates this particular nerve............plz guide me actualy my father already suffer n m elder n care giver of him i am realy scared plz plz. guide me what should i do i dont want to go 4 EMG test m scared i saw my father when he came after this test wd this disease. so i cant go there ......thnx
 

CindyM

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Learn about ALS
Country
US
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New England
City
Anytown
Hi Salma-it is a terrible worry when you know first hand the effects of this disease. I think having a relative with any terminal illness makes people worry if they could have it too. But the good news is that the hereditary form of ALS is even more rare than the "average" kind-which is pretty rare in and of itself. Maybe you should get tested for the gene, just to know for sure. Cindy
 

brooksea

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Sep 27, 2006
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Salma,

I am very sorry you have been going thru the pain of seeing your father suffer.

I can only say that you really need to go to a neurologist that is an ALS specialist to have yourself evaluated. The EMG is necessary and my husband had a little discomfort. How old are you?

Perhaps someone else that has the familial ALS can give you advice on genetic testing.

Could you tell us where you live? Others that live near you could possibly educate you on an ALS clinic in your area.

I know you are under severe stress and anxiety. I will keep you in my thoughts.

Please let us know how you are.

CJ
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi guys. Salma is 27 and lives in Karachi Pakistan. The ALS clinics are few and far between there as are a lot of meds that we take for granted here. She has been going through a terrible time looking after her father with limited resources. We complain about our heath care system but at least we have one.
AL.
 

alspatient

Member
Joined
May 6, 2007
Messages
21
Reason
PALS
Country
IN
State
Tamilnadu
City
chennai
Hi I am from India

Salma,
I am from India. I have had this for over 8 years.
Long time ago, may be some thirty years ago, I used to have fasciculations or musle twitching. It was fun watching my leg oscilate. I did not know what that would lead to.
But you are under stress. It is normal and quite common, often triggered by stress or anxiety. But it is better to get some medical advice.
In India, Rilutec which is the only drug approved is provided free for all ALS patients. I do not know about Pakistan. If it is to be imported from US, then it would cost a fortune. Please let me know if it is available. If not, then let us find a way of giving it to your father. I am sure that patient care is beyond our petty quarels. Please let me know.
 

brooksea

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Joined
Sep 27, 2006
Messages
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Other
Country
HM
Salma,

Yes Al is right, often times we take for granted things in our country.

I truly hope you are able to find some help in your situation.

CJ
 
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