Like your video, mine started out with foot drop also.I had x-rays of the foot and back, MRI of both then vascular and nerve study test a d finally EMG test.I should of went straight to EMG at the beginning
How are you doin Victoria? My husband’s side deals with familial ALS. I didn’t know this until I was freshly 20 and about 2 months pregnant, I was terrified and still am to be honest. It’s been a constant worry to think about my children and husband going thru this. My father-in-law passed away roughly 2 years after the diagnosis. We lived with then near him for the last 1.5 years of the ALS journey. It was very hard seeing the speed of progression. He was able to be there for the first 18 months of our son’s life. Of course my son now might not remember those memories, but we made sure he knows who that man in the pictures is. He passed away shortly after we told him I was pregnant with our 2nd baby. He never got to know if we we’re having a girl or another boy. Having this disease potentially pass onto your kids makes it hard to want a big family, the guilt and fear is dreadful. I hope you’ve been staying positive. You’re the first VLOG channel I’ve found about familial ALS, I look forward to updates. Please take care. God bless you and those around you❤️
Victoria, hi, this Silvia Murray, I also have the gene mutation and was diagnosed in August, 2023 with bulbar motor nueron disease. Keep smiling, we are still living, loving and hoping for a reversal. 48 worldwide so far.
Thank u so much for sharing this tough health journey. So we know you’re part of the 5-10% that carries the gene mutation. 😢 Did u also have gut dysfunction prior to diagnosis by chance? There seems to be a strong correlation between gut issues/ALS, but I don’t know if that applies to the genetic cases. Sending you positive vibes north to Maine from Carolina!
You’re beautiful to share your story, and I’m here to support you!
Thank you so much!!
I love when you post something Victoria. Thank you very much.
You are so welcome!
I see nothing but strength and courage in this video. Take care of yourself hun. : )
My husband also carries the C9 gene. Thank you for sharing your story.
I’m so sorry to hear that
Like your video, mine started out with foot drop also.I had x-rays of the foot and back, MRI of both then vascular and nerve study test a d finally EMG test.I should of went straight to EMG at the beginning
How are you doin Victoria? My husband’s side deals with familial ALS. I didn’t know this until I was freshly 20 and about 2 months pregnant, I was terrified and still am to be honest. It’s been a constant worry to think about my children and husband going thru this. My father-in-law passed away roughly 2 years after the diagnosis. We lived with then near him for the last 1.5 years of the ALS journey. It was very hard seeing the speed of progression. He was able to be there for the first 18 months of our son’s life. Of course my son now might not remember those memories, but we made sure he knows who that man in the pictures is. He passed away shortly after we told him I was pregnant with our 2nd baby. He never got to know if we we’re having a girl or another boy. Having this disease potentially pass onto your kids makes it hard to want a big family, the guilt and fear is dreadful. I hope you’ve been staying positive. You’re the first VLOG channel I’ve found about familial ALS, I look forward to updates. Please take care. God bless you and those around you❤️
rather than be "terrified" go get tested , your children...everyone you are concerned about. then you won't waste time and energy💐
@@leaveittolefty you are so right!
Victoria, hi, this Silvia Murray, I also have the gene mutation and was diagnosed in August, 2023 with bulbar motor nueron disease. Keep smiling, we are still living, loving and hoping for a reversal. 48 worldwide so far.
Hope you’re doing ok
Hi, i have ALS also. I am 27 years old
I’m so sorry to hear that
When you suffer in ALS
Thank u so much for sharing this tough health journey. So we know you’re part of the 5-10% that carries the gene mutation. 😢 Did u also have gut dysfunction prior to diagnosis by chance? There seems to be a strong correlation between gut issues/ALS, but I don’t know if that applies to the genetic cases. Sending you positive vibes north to Maine from Carolina!
Hello Wendy, no I did not have any Gut Dysfunction prior to diagnosis. Thank you so much for your comment.
What medications are you takings. I take Riluzole and foot drop started January 2022. 67 years old now.
RILUZOLE only with a Anti Depressant
How are you now
😢
Keep punching Victoria.