Old 10-10-2018, 03:29 AM #1 (permalink)
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Default Finally a formal diagnosis

Now nothing is left to speculation. Formally diagnosed at India's best neurological institute NIMHANS...FAMILIAL AND. Do not know what to do next...I have two small kids 11 and 6 year old...as per the docs there riluzole does not help in familial cases n there is nothing that docs can do.....
Both legs weakening and crawling insect sensation moving up and up along with twitches...w.eakness increasing so is fatigue..

It is a death sentence...n we have to wait silently for death....

Does anybody take creatine...how beneficial is it.
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Old 10-10-2018, 05:18 AM #2 (permalink)
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Default Re: Finally a formal diagnosis

Mod note: Anjum has previously posted on family history and asked about genetic testing.


I'm very sorry to hear this news. I know some PALS here with familial forms are on riluzole and feel that it has helped, so you may want to push back on that conclusion. And there are certainly things to be done such as BiPAP, mobility devices, apps for speech, a feeding tube, etc. if/as the need arises.

We have had some threads on supplements recently -- you can use the Search link in the top menu (white text on blue background). It is worth considering everything in your own context (other conditions, priorities), so take your time to process this news.

Best,
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Old 10-10-2018, 07:04 AM #3 (permalink)
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Default Re: Finally a formal diagnosis

I am very sorry

I am FALS. I take riluzole and believe it has helped My neuro agrees. I have friends with other mutations who say the same

My sister tried creatine. She did not feel it helped and it was quite burdensome because of the extra fluid. As Laurie says many of us have tried various supplements

For me using energy wisely and not getting overtired and riluzole seem to have helped

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Old 10-10-2018, 11:07 AM #4 (permalink)
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Default Re: Finally a formal diagnosis

I’m sorry to have to welcome you here.

You say it is a “death sentence”.

While that’s technically true, keep in mind that everyone on earth is dying. We just do it a bit faster. Meanwhile, you have some living to do, and I hope you do it as well as you can.
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Old 10-10-2018, 01:20 PM #5 (permalink)
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Default Re: Finally a formal diagnosis

I understand your feelings. I was diagnosed last month. As you come to grips with the diagnose start assisting your wife and family in planning for the future. I have found this rewarding.
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Old 10-11-2018, 02:51 AM #6 (permalink)
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Default Re: Finally a formal diagnosis

Thanks one and all for your concern..there are so many trials going on especially for fals..the ologos and stemcell and gene blocking trials ...do not know when they will see the light of the day...we need medicine desperately to move out of this vicious cycle of death...can giostar stem cell therapy be of any help for familial als
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Old 10-11-2018, 02:52 AM #7 (permalink)
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Default Re: Finally a formal diagnosis

My mother and aunt both had grown some beard hairs on chin post disease onset..I too have g4own some ling hair ..does any other lady have it....there seems to be a relation between mnd and hormones
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Old 10-11-2018, 07:49 AM #8 (permalink)
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Default Re: Finally a formal diagnosis

Well estrogen is felt to be possibly protective- some forms of FALS have slightly later onset in women and the gender difference in SALS is more pronounced at younger ages. It may be that hormonal changes and lower estrogen did allow the MND to flourish
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Old 10-16-2018, 11:26 AM #9 (permalink)
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Default Re: Finally a formal diagnosis

U too are fals....do u have kids or.siblings...are they too having fals....if yes how do u manage the disease and emotions as well.....my mother and aunt had it....Now I have and am worried for.my two daughters....it is a terrible disease....n nobody will like anybody else from the family gets it....can I know more about u n your family regarding the disease...how close are we to the g3netic solution of the disease...
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Old 10-16-2018, 11:38 AM #10 (permalink)
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Default Re: Finally a formal diagnosis

I am c9. My only sibling is already dead. But there is a trial right now for c9 and one already 2 plus years in for sod1. Answers are getting close. I have repeatedly been told not to worry about the kids.

Did you ask for genetic testing? C9 is a disease mostly of white Northern European ancestry but sod1 is more diverse. There are a number of mutations known now. Knowing probably won’t change anything for you but it would be good information for your kids
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Old 10-20-2018, 06:55 PM #11 (permalink)
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Default Re: Finally a formal diagnosis

I am sorry to have to welcome you here, but welcome nonetheless.

You are right that it is a death sentence, but everyone will die someday. Perhaps we know a bit more about the way we are likely to die and have better insight into the timeframe.

But, life is wonderful and I think a great way to handle a terminal illness is to wake up each morning and get the most out of each day. There is still much we can do, regardless of the path we are on. Spend time with loved ones, make new friends, see the beauty in the world around you, and try to make a positive difference in other people's lives.

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Old 10-21-2018, 01:22 PM #12 (permalink)
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Default Re: Finally a formal diagnosis

I want to know what we're the first symptoms of als patient....
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Old 10-21-2018, 05:34 PM #13 (permalink)
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Default Re: Finally a formal diagnosis

Anjum everyone is very different as ALS does not follow a set pattern.
I'm very sorry for your diagnosis.
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Old 10-22-2018, 09:56 AM #14 (permalink)
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Default Re: Finally a formal diagnosis

As affected said it is different for everyone. That’s why it is very difficult to diagnose. As I have learned more about ALS I look back and recognize that I had symptoms a year or more before my PCP finally decided to get more tests. Is that a bad thing? Probably not, as I was living without carrying the burden of knowing I had ALS.
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Old 10-23-2018, 12:53 AM #15 (permalink)
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Default Re: Finally a formal diagnosis

I had pain shooting pain in my back and abdomen...I was admitted treated with antibiotics and painkillers and a provisional diagnosis of possible appendix was made ....but back pain and abdominal pain did not go...it was followed by crawlng worm sensation and followed by twitches in abdomen which later went on to both of my legs..with passing time the disease kept on spreading and there was not a break of single moment of the symptoms....I had pain in.my little finger of the right leg which ran all along to the hip...follow by weakening of the muscle mass of the leg..loose and weakened muscles ......same thing happened to all the three other limbs..and I could notice sagging muscles and weakness in feet...and rest is the story we all know disease covering areas afer areas back legs every part involves n then weakening fatigue and stress...today better than tomarrow and tomarrow better than day after tomarrow....
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