Status
Not open for further replies.

najib

Member
Joined
Jul 29, 2018
Messages
15
Reason
Loved one DX
Diagnosis
06/2018
Country
MA
State
SL
City
rabat
HELLO every one i want to thank every one who take his time and read this .
my name is Najib I'm 28 years from morocco "north Africa" . we found recently that my father has ALS after a year of suffering between doctors and tests . you cant imaging how devastating was that to me and to my family . especially that i live in third world country that have no clue what ALS and have no health infrastructure no support for people with ALS. the expenses of the drug "rilutek" too much for us and we cant find it in morocco and we have to order it from France and wait for weeks to get it , we buy the drug for 300$ its so so expensive .
the thing is that in 4 months ago i had twitching and weakness in my hand my shoulder and my legs and clumsiness in my finger and i found lately a dent in my hand that really scare me especially that i read 5% to 10% people inherit ALS .
i cant go to a doctor cause i expensive and i have no money to do that and i dont want my family to know about that because it will make them collapse , the only place i found that i can share and take advice from is this forum.
please look do i have ALS and i m so sorry for the poor English and thank you+
NAJIB.
 

Attachments

  • 20180730_163922.jpg
    20180730_163922.jpg
    26 KB · Views: 278
  • 20180730_163929.jpg
    20180730_163929.jpg
    33.2 KB · Views: 242
  • 20180730_163952.jpg
    20180730_163952.jpg
    35.1 KB · Views: 247

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,690
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Re: Do I HAVE ALS ?

Najib, very sorry about your dad. It would be very, very unusual for you to get ALS at pretty much the same time as your dad, and a lot of us have differences between hands and twitches from time to time. You are under considerable stress as you say, and that can cause twitches as well. I would also guess you are not eating as well as you have in the past.

I don't see anything concerning in your photos, but it would be much more important if you found yourself unable to perform specific activities like lifting, reaching and holding things.

I also have to be honest -- if Rilutek is costing you a lot and it's money that's almost beyond your reach, I would not worry about it. The benefit for most people who had symptoms for a year, starting in the limbs and who is not terribly old is not established statistically.

I would instead spend that money, or whatever you have to spend, on future supplies that will make your dad more comfortable. At some point, he will most likely need a BiPAP and perhaps a feeding tube, to go on. Is he able to breathe and swallow well right now?

We will support you however we can.

Best,
Laurie
 

najib

Member
Joined
Jul 29, 2018
Messages
15
Reason
Loved one DX
Diagnosis
06/2018
Country
MA
State
SL
City
rabat
Re: Do I HAVE ALS ?

thank you so much Laurie for your respond im crying now as as i see your support thank you very much
and as answer to your question the disease start in his moth area and now he cant swallow he cant talk move his tong or close his mouth fully plus he get annoyed by the excessive saliva and i cant cut the drug it will make him lost hope and he could do something bad to him self im the only one in the house who know much about the disease and i don't know
im sorry for bothering you with my problems but i didn't find any place to do that
thank you.
Najib
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,690
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Re: Do I HAVE ALS ?

It is never a bother, Najib. That is what we are here for.

OK, so keeping on with the riluzole (you might see if the generic is any less expensive for you).

If your dad can't swallow, how is he eating? Is he getting or does he have a feeding tube?

I am moving this thread to the caregivers' section as I think that is the help you need most.
 

Larrytbm

Distinguished member
Joined
May 13, 2017
Messages
102
Reason
Lost a loved one
Diagnosis
05/2017
Country
US
State
TX
City
Austin
I agree with Laurie, save your money for the BiPAP and feeding tube and medicine to help control the saliva, maybe even a suction machine to help. All of these will be a comfort to your dad. Consider a placebo instead of the riluzole to ease your father's mind until he feels the benefit of those other changes.
 

najib

Member
Joined
Jul 29, 2018
Messages
15
Reason
Loved one DX
Diagnosis
06/2018
Country
MA
State
SL
City
rabat
thank you so much Laurie for you respond and your support ill never forget that
and no he don't have feeding tube and he don't want to . he eat every thing in liquid state and he didn't lose all ability of swallowing he can drink but he cant move his thong up down or left right and he cant close his mouth fully


thank you larrytbm for your respond and you advice . however the doctor said he should get the drug i cant change that like i said before if said that the drug cant do nothing for him he will kill him self he already lose so much wight because of his fear and depression

i apology for my weak English and thank you so much for reading this .
 
Last edited by a moderator:
Status
Not open for further replies.
Top