Mom diagnosed with ALS weeks after being 'cancer free'

amybeth

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Jan 10, 2020
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Reason
CALS
Diagnosis
12/2019
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TN
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Knoxville
Wow the past 18 months....I got married, had a baby, in a long-distance relationship while my husband made a career change, and bought my company. Unfortunately at the same time in the past 18 months, my mom was diagnosed with genetic linked breast cancer. She went through chemo and surgery, only to get diagnosed with ALS within weeks of being 'cancer free'. The ALS diagnosis was a week or 2 ago. I am absolutely devastated. For some reason, I could live with the cancer diagnosis but not this. I've been crying for days on end over this ALS diagnosis and seeing my mother in such bad shape. The ALS has progressed extremely rapidly; as hard as chemo was on her, it's nothing compared to this. She's almost already lost all ability to talk, swallow, and breathe; it happened very very fast. She can barely move on her own. Luckily (read that with whatever attitude you want to imagine) I've had flu A and pneumonia over the past 10 days so at least I am able to work from home while I wallow in my depression out of public eye.

My mother and I have always had a rocky relationship. She's spent decades addicted to prescription pills and it's caused bad behavior and a horrible riff between us. She was very abusive towards me and my brother. I eventually stepped away to distance myself for my own health and safety; and we've gone for over a year on multiple occasions without speaking or seeing each other. If anyone would take initiative to communicate, it would be me. My mom is an only child, single and has been since I was 10. I'm 34 now. A family friend had a preacher go speak with my mother and my mother told him that she had been really mean to her daughter and wanted to make amends. I stepped up and we're at least talking as best we can as of 3 days ago. When I was pregnant; she was nothing but hateful. She'd tell me I was a mistake and that she didn't want a grandchild either. Her tune has changed now that she's seen the baby and she has this terminal diagnosis; she now wants to be Nana.

My mom's mother was diagnosed with dementia around age 78-80; she's 90 next month and doesn't know who or what or where she is. She's lived a miserable existence for the past 4-5 years. My mom also had an aunt (her mom's sister) who died of Alzheimer's. Their mother died of a stroke at 47. Not the best track record for the family. I've read about the genetic link so I'm assuming this is familial. I have a 6 month old baby girl, and I'm dying inside at the thought of putting her through this heartbreak. Maybe she will, maybe she won't have memories of her Nana. Maybe she will, maybe she won't suffer this fate with her mother or of herself. What a burden to bear.

My mom said she has not read up on ALS and will in time, she says. She talks about how hopeful she is about potential treatments and that good doctors should be able to help her. I'm trying stay strong but oh my gosh, I don't have it in me. I am grateful my husband is now home. We've had to live 3 hours apart for the past 18 months while he was in pilot training. This was better than the 7 years he spent off and on in Iraq before this. He moved back home 3 weeks ago. I thought I was set and life was good. I have my dream man, beautiful baby, amazing family, a new house, and I signed contract to buy my 50 year old company the week before Christmas. I will officially own one of the top agencies in my industry nationwide as of July 1. My dreams were all coming true. I was living my dream; and then this time-bomb all came crashing down. Crying 247 in my basement like I have been this week won't help me be a good mom, daughter, wife, or boss. I need to find the will to move forward.
 

lgelb

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I'm very sorry, AmyBeth. Your mom's progression sounds very fast and since chemo can cause nerve damage, and cancer can be associated with similar issues, I presume she has had a second opinion on her ALS diagnosis.

I'm not sure what your concerns are about genetics, but many diseases of aging may be far less devastating by the time your daughter is an adult.

With all the changes in your life, I would encourage you to consider counseling at least in the short-term. We'll support you and your mom as best we can.
 

amybeth

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Joined
Jan 10, 2020
Messages
3
Reason
CALS
Diagnosis
12/2019
Country
US
State
TN
City
Knoxville
Thank you Igelb, yes she's had 2 neurologists confirm the ALS diagnosis. I have wondered if the chemo played a role in the progression seeing as how the timelines overlapped. She had no signs of ALS prior to the chemo and she was only on chemo for 9 months-ish. I've also wondered about her years of prescription drug abuse. She's taken Gabapentins, Xanax, Wellbutrin, and pain pills for 20+ years. I have always wondered what pumping her brain and body full of chemicals was doing. If that's enough to be a triggering factor in all of her conditions; or what not. I appreciate your response.
 

Nikki J

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Mar 22, 2012
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8,298
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PALS
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04/2014
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I am sorry.

i am going to address what I guess you meant about assuming this is familial. I think you were saying since your mom has ALS and her mom and aunt have/ had dementia you are assuming this is FALS. it is true that FTD is sometimes misdiagnosed as Alzheimer’s though less frequently now than in the past. The odds are in your favor that it is not FALS especially given your grandmother’s advanced age. However, it is worth having your mother tested for c9orf72. If it is by chance genetic this will be the answer.

we are close to answers for c9 and they are hoping to do prevention trials once they have something that helps C9 PALS. I
 

Kristina1

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Jan 26, 2017
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PALS
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03/2017
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Grafton
One of the local ALS charities here is in honor of a late PALS who also survived cancer and then was diagnosed ALS. I would agree with your guess that tthe stress of the cancer and radiation/chemo impacted disease onset and progression. I don't believe it causes ALS but I think stress on the body can possibly trigger onset sooner than it otherwise would have happened. I had surgery and my symptoms started right after that. I have always believed the surgery hastened my disease onset. I have no research to back this up, but it's my hypothesis.
 

sohail009

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Jul 19, 2019
Messages
34
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Loved one DX
Diagnosis
7/2019
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Sorry to hear about your mother. My father case is almost same. He has bladder cancer and after his Chemo, specially on his last visit they insert the needle in his back which actually he felt hit on his spinal. It was a true case of carelessness but anyway after that his condition was declined very fast. We went through various docs/specialist from heart to nuro, and finally he was diagnosed with ALS. Which was later confirmed with three other neuromuscular docs. His progression is also very fast. I personally feel either that needle has break some nerve or Chemo trigger ALS in him.
I also spoke to my primary doctor and interestingly he mentioned that one of his patient who was also diagnosed with ALS right after the chemo. Not sure if Chemo has to do anything with ALS for some patients/bodies.
 

amybeth

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Jan 10, 2020
Messages
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CALS
Diagnosis
12/2019
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US
State
TN
City
Knoxville
Sohail009; does it run in your family? Has your father tested genetically?
 

sohail009

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Joined
Jul 19, 2019
Messages
34
Reason
Loved one DX
Diagnosis
7/2019
Country
SG
State
NA
City
Singapore
Sohail009; does it run in your family? Has your father tested genetically?
Has your father tested genetically? Answer is NO. So far I have not seen anyone in my close relatives if they had ALS.
 

Dee Dee 0617

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Nov 27, 2019
Messages
76
Reason
PALS
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11/2016
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MI
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Escanaba
I am so sorry. You have described a truly horrific situation. I do want to take a moment here to say thank you for your husbands service and your support of that service. I am thrilled for you and your families future. Your little one will have a Nana, because regardless of your moms time here, you will introduce them, through food, traditions, stories etc. You have mentioned quite a few illnesses that your family have had to endure, please don't worry about this being hereditary. Your moms medical team will have that conversation with you. I am not a doctor, but with what you have cited I don't see that being viable. This has happened very quickly, please don't feel badly about the overwhelmingness of this. We're here ask what, when, where, who, and why whenever you need too. God bless you.
 

SpeedyMarie

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Joined
May 24, 2019
Messages
26
Reason
PALS
Diagnosis
08/2019
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US
State
TX
City
Houston
Amy Beth,
I’m so sorry your going through this. Please take care of yourself and your baby.
 
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