Old 10-10-2018, 02:29 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, 04:18 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,
Laurie

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Old 10-10-2018, 06:04 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, 10:07 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, 12:20 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, 01:51 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, 01:52 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, 06:49 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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