Cancer, now ALS?

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Lorilu71

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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.
Im in same boat..i am 48 i beat lung and ovarian cancer in july and now bei g diagnosed with als..i had no chemo tho as both were stage 1
 

Lorilu71

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I have a questions about emg...can they differentiate between carpul tunnel and als and if its torso onset would just doing an emg on one leg and one arm pick it up. Need feed back from experiened. Thank you so much
 

Bestfriends14

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Yes, they would be able to tell the difference. The medical professionals would take the results of the EMG, along with other clinical findings and give you an opinion based on that. I'm not sure why you're asking, though, as you have not given any background with your questions.
 
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Lorilu71

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Well heres my long story ..aug 18 my vision went blurry on left..drs couldnt find a cause so i went along with it then in may 2019..i started getting back m spine pain and muscle twitches went to er and diagnosed with lung cancer...muscles twitches started goin all in between ribs and few other places n left groin..after pet scan they also found stage 1 lung cancer...

in june i started getting kidney pain n acid reflux. Never had ever before and then had both cancer surgeries in july...pain has just kept spreading in back and know for a few months now my stomach muscle right under sternum is in a spasm 50 percent of the time and have had a constant lump in throst since june and during all this time i am having constant gurgling in stomach and goes up thru diaphragm and i have small electric type shocks in diaphrahm rib area and deep twitches in stomach and diaphram and sometimes diaphrahm is in so much pain like a bad stomach ache in diaphram and weird spine pain that almost makes me feel like im going to be paralyzed for a second...

now muscle twitches are still n back n stomach n torso n now are also in arm n legs and in face and throat...and can feel weird pulsing sensations in face head and diaphrahm n stomach..in dec both hands went weak like i type at work and i can still use them but it tAkes work and they shake sometimes and a slight jetk when holding phone n etc...i feel aches everywhere like arms legs butt n hips n neck...

i went to a neuro yest for emg and he was a bad dr..should of read his reviews firsr...he only did a nerve cond on one arm n one leg and just it was all good except carpul tunnel...i have no pains on had just weak shaky n go to sleep very easily and slight jerk sometimes...im almost certain that i have torso onset als that has just moved to hand in dec and arms arw starting to get it...

my question is how does an emg differenriate between carpul tunnel and als...and if i do truly have torso onset als would only doing an arm n leg truly pick that up...im also worried that since its just started a month ago in my hands that its mimicking carpul tunnel..i believe my cancer brought om als....any thought n responses are highly appreciated.

Oh btw my vision has not got better and am so dizzy n both eyes have eye floaters...and mris n bloodwork were all normal and eye tests
 
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Bestfriends14

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I'm.sorry for what you are experiencing, but I can 100% say to you that nothing at all of what you have posted is ALS. Period. There are abnormalities found on an EMG associated with ALS that are very different than ones found with carpal tunnel syndrome.

The biggest thing that screams ALS is an ability to do things such as raise on toes, go back on heels, clip fingernails, turn a door knob etc. Twitching means nothing at all and does not make up a part of the clinical picture when diagnosing ALS.

You have not described anything at all when it comes to ALS onset. I would truly put aside that worry or you will end up wasting precious time in your life where you could be enjoying activities with friends or family.

The short of it is, you do not need to be here. That's a very good thing. Be grateful you do not have this dreadful disease; dont go chasing it.
 

Kristina1

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This does not sound at all like ALS. I'm sorry for your health problems but the good news is ALS is not in the picture.
 

Lorilu71

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Can i just ask one more question...just say it was torso onset and it hasnt affected another area yet and and emg was done only on one leg and hand would it pick als up in the torso?
 

KarenNWendyn

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Can i just ask one more question...just say it was torso onset and it hasnt affected another area yet and and emg was done only on one leg and hand would it pick als up in the torso?
Usually, because denervation in ALS is often widespread and picked up by EMG before a person experiences symptoms in that area. The doctor often stops after testing only one to two areas if those are normal unless the symptoms and exam findings dictate otherwise.
 

Lorilu71

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Usually, because denervation in ALS is often widespread and picked up by EMG before a person experiences symptoms in that area. The doctor often stops after testing only one to two areas if those are normal unless the symptoms and exam findings dictate otherwise.
Thank you very much for responding...may i ask when you first noticed something wrong with your hand and arm...can you describe what it felt like? And what hand felt like at night in bed. Like did it ache or shake or slight tingly or jerk or fall asleep?
 

KarenNWendyn

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I had none of your symptoms. I never felt weak. My fingers just stopped working to the point where I couldn’t fasten buttons or play a musical instrument I had played for decades.
 

Nikki J

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Ditto to no feelings associated with failure didn’t and don’t feel weak,shaky, tingly, achy nor did it jerk. You are listing a ton of symptoms that are not ALS symptoms. Twitching is non specific and common. Your emg didn’t show ALS. You are in the wrong place here
 

Bestfriends14

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The wonderful thing is, you dont have ALS, therefore, your time on an ALS forum that exists for those that do, or their caregivers, is unnecessary. You have asked the same question a couple of times and been given answers by a few members. As well, you state you would like to ask "just one more question" but continue to ask questions even after you've been answered.

You dont have ALS and no amount of questions will change that.

Best of luck to you and do take good care.
 

Lorilu71

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The wonderful thing is, you dont have ALS, therefore, your time on an ALS forum that exists for those that do, or their caregivers, is unnecessary. You have asked the same question a couple of times and been given answers by a few members. As well, you state you would like to ask "just one more question" but continue to ask questions even after you've been answered.

You dont have ALS and no amount of questions will change that.

Best of luck to you and do take good care.
Im so so sorry i am just really really scared what my body is doing..its been a year n half of body getting worse..thank you for your time.
 

Lorilu71

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Ditto to no feelings associated with failure didn’t and don’t feel weak,shaky, tingly, achy nor did it jerk. You are listing a ton of symptoms that are not ALS symptoms. Twitching is non specific and common. Your emg didn’t show ALS. You are in the wrong place here
I hqve read several forums where arms and hands ache n shake from time to time and my twitches have moved from back to arms and legs...my stomach muscle is almost constantly knotted and nonstop lump in throat i have read that happens too...i have so much back pain since may when twitches started n hands and arms just start3d in dec i know my emg was clean but he didnt do torso and i read i takes several emgs alot of times. My back pain is almost unbearable..this is scary along with all my other symptoms
 

Nikki J

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You posted looking for opinions experiences. You have them. Feel free to disbelieve. I am closing the thread. Do not start another.
 
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