Old 01-09-2018, 12:55 PM #1 (permalink)
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Default I am so worried

Hello, let me tell some background information. My mothers mother had ALS and was diagnosed in her late 60's. Her disease started from the throat. Her two sisters died of this disease too. My mother had als and was diagnosed at 53 years old and her disease started from her right leg if i remember correctly. Both were dead within 2 years from diagnosis. I am male and my age is 24. In the last 2 generations no male has had this disease. Also from my fathers side there is no ALS. Now at 24 I have been so worried all the time. Month ago I had symptoms in the throat. They vanished in 4 days. Now i have symptoms in my right hand. It feels tingly and numb all the time. I have tried to test if my strength has been affected but I cant say for sure. Also I have to say that I have had psychosis earlier in my life also and am now diagnosed as schizophrenic.

Should I be worried?

Thanks for answers in advance.
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Old 01-09-2018, 01:17 PM #2 (permalink)
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Default Re: I am so worried

Hi
I am very sorry for your family history.

I understand your concern and bottom line I think you will be ok so bear with me as this may sound scary.

And congratulations on a fascinating post.

I think you are fine right now as far as ALS goes. It doesn’t sound anything like it.

I do think you should talk to a geneticist who knows about FALS. Your family history indicates FALS and it is highly likely from what you have said that it is C9 orf72. Your location and the ages of your relatives make it even more likely than the already likelihood just because 40 percent of FALS is C9.

There are 3 trials supposed to start this year for c9 and more are in the pipeline. There will be an answer before you are of an age to be affected by ALS

Now the cool part here is ultimately this could be great news for you. Schizophrenia and psychosis can be manifestations of c9. If c9 is causing your schizophrenia maybe some day the gene blocking treatments could be used to help your schizophrenia. It probably won’t happen until a therapy has been approved and used a while for ALS. It is possible of course your schizophrenia has another cause but given the family history it seems likely it is all one.

This is really good news for you

To summarize
You don’t have ALS
You are not currently at risk
You will have a treatment for ALS if you need it
You can hope for a new approach to your schizophrenia eventually.

Please go to a knowledgeable geneticist and let us know what happens

Last edited by Nikki J : 01-09-2018 at 01:34 PM
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Old 01-09-2018, 01:25 PM #3 (permalink)
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Default Re: I am so worried

That is really good news. You gave me some information I never even heard about. Yes I knew that FALS strikes at an older age usually so this made me feel a lot better. And maybe one day I would be able to get rid of my delusions etc. associated with schizophrenia. Thank you and God bless!

How are you doing? Are you okay? I saw you have been diagnosed. I want to give you all my love and compassion because you need it. Anyone affected By this needs all the support they can get . Lets hope this new treatment I have heard about helps called NurOwn. You heard about it?

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Old 01-09-2018, 01:37 PM #4 (permalink)
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Default Re: I am so worried

Am I correct that there was a 50% chance that I got the mutated gene from my mother? But it doesnt mean that I will get this FALS? Right?
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Old 01-09-2018, 01:48 PM #5 (permalink)
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Default Re: I am so worried

Yes you are correct. It is 50-50. C9 ( most likely scenario) is pretty penetrant meaning likely to cause ALS or FTD though it is not 100 percent. However please remember what I said treatments are around the corner. They will be there if you ever get ALS- but maybe you will get treated before for your schizophrenia.

Try to find a geneticist that knows this. It is specialized so a general geneticist may not know what you are talking about. Normally an asymptomatic family member of a FALS family of unknown mutation doesn’t get tested. You might find a researcher though who will be intrigued by your story.
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Old 01-09-2018, 03:40 PM #6 (permalink)
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Default Re: I am so worried

So what do you think about the fact that my grandmothers Brother is fine and he is over 70, about my uncle I dont know but last I saw him he was 50 and was fine... Can it be that the illness in this family is only in women OR did my uncle and grandmothers Brother just have really good luck?
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Old 01-09-2018, 03:45 PM #7 (permalink)
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Default Re: I am so worried

It is probably good luck. The major FALS genes don’t discriminate though your uncle is still under the most usual onset age for c9 which is late 50s though it was a wide variation
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Old 01-09-2018, 03:51 PM #8 (permalink)
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Default Re: I am so worried

ok thank you, can this thread be hidden so only I can read it? I want to show it to someone but dont want someone to identify me.

Or it can be closed and I can make a copy of this thread.
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Old 01-09-2018, 03:56 PM #9 (permalink)
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Default Re: I am so worried

No it can’t be hidden. It can be closed but will still be viewable. If you wish to close it click on thread tools Please do find a genetic counselor who knows about fALS/ C9
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Old 01-09-2018, 04:01 PM #10 (permalink)
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Default Re: I am so worried

Oh well, then it doesnt matter. I ll post here whenever I go see a genetic specialist. But this information you gave me was good.
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