Old 07-22-2016, 06:30 PM #1
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Default FALS recently learned

I knew of my grandmother dying of ALS but thought that was it (she died at 73). Last year my mother began with a foot drop and she saw a thrillion Drs, dont know how many CT scans and MRI's. Until last week where it was confirmed it is ALS at age 65. Upon review of fam hx turns out 5 of my grandmother's brothers died of ALS roughly in their 60s - 70s. We are three sisters and we all have kids and this have been devastating news. Since my mother got her possible diagnosis I have felt twitches/cramps and what not but is mostly anxiety. I have no questions just wanted to share my story, this is soo painful and I dont know how to cope with this news and seeing my mom struggle is very painful.
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Old 07-22-2016, 06:45 PM #2
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Default Re: FALS recently learned

I am so sorry. Being FALS is horrible. I hope your mom is getting genetic testing. There are treatments being developed for the more common causes of FALS so it is important to know for the future what you are dealing with in case prevention becomes available.

I do believe answers will be there for your children and you and your siblings. I am sure you have been told your chance of inheriting a defective gene is 50/50. If you do not have it you can not pass it on.

In time you may decide to get gene tested ( lots to think about there) and participate in FALS research if you are a carrier

In the meantime be kind to yourself as you process this. It is very tough I know. Feel free to post in the CALS or general sections for support
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Old 07-22-2016, 08:22 PM #3
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Default Re: FALS recently learned

Stay in touch, Faith.
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Old 07-23-2016, 02:23 AM #4
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Default Re: FALS recently learned

I'm so sorry Faith, I just want to say DITTO to everything Nikki said.
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Old 07-23-2016, 07:12 AM #5
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Default Re: FALS recently learned

Thank you all! thank you!!!!
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