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Zuki2020

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Hi there, my mum was diagnosed will ALS in 2018 and now worried about my symptoms. What started as a dry scratchy throat and dry mouth then started to panic, lump in throat lead me to believe I had throat cancer then oh my goodness I have the same as my mum. Feels like my throat is jumping sometimes. Now feels like there is a lump in my throat when I swallow, burning tongue, burping seems to help. I have had panic attacks now tingle in my legs and sometimes my body. I have been to an ENT which he gave me the all clear. I don't have any other symptoms although very concerned. Very emotional. Thank you for your advice.
 

ShiftKicker

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Hello- have a read here first: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms . What you are reporting doesn't seem to fall into any sort of concerning territory for ALS, as you will read in the link.

I am so sorry to hear about your mum. That must have been a shock for your family. Know that this forum is great for support for PALS and CALS and there is lots of information about care and equipment.

We get a few folk through here who've had a loved one diagnosed with ALS and who are now worried for themselves. Having a loved one receive a diagnosis like ALS can be very stressful and can make you be a bit vigilant about perfectly normal aches and pains. Stress can also cause a variety of physical symptoms and the added worry for a family member can just escalate the concern. By all means, get checked out by a doctor to make sure you are in good general health, but unless you have a known family history of ALS, with multiple cases of it other than your mum's, there's not a big chance ALS for you.

best
 

affected

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So sorry about your mum - please go back to your doctor and discuss again as this is definitely not ALS. You deserve to get well again. Posting here is the worst thing for you, so get a tele-appointment set up and start working on your anxiety as it can ruin your life.
 

Zuki2020

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Afternoon and thank you for taking the time to read my concerns.

About 8 weeks ago I started having a dry throat and mouth and from there it has progressed to a lump feeling in my throat. When I swallow it feels like something is there and is sliding down my throat. Not sure if it is the top of my mouth or my tonsils or the back of my throat. Now when I lie down in bed on my back my neck feels heavy, tight and uncomfortable. My throat also tingles and sometime feels like it is jumping. I don't have any slurred speech although I sometime feel my tongue different. Where my Adams apple is it hurts. I'm very worried and stressed. I also sometime feel that different parts of my body is jumping. I haven't been able to sleep due to my stress levels over my concerns.

I have been to an ENT which came back negative to everything. Is an ENT qualified to make that assessment.

The reason for my concerns is that my mother was diagnosed with ALS in 2018. I'm a 48year female, single mother with a 9 year old. There isn't any other family members who have been diagnosed.

Again thank you, I would love any feedback and advice.
 

ShiftKicker

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Hi there- I've moved your post to your existing thread. It helps people here see all the questions you've asked, and the answers you've received already if everything is in one thread.
 

Zuki2020

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Thank you, looking forward to receiving messages from your lovely members.
 

affected

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We already answered you I'm afraid - we can't keep saying the same things over and over.
This is our answer- read it again at least twice so you absorb it all.

The odds of you being diagnosed so close to your mother are pretty much zero - if it were familial you would be diagnosed much closer to her age.
 

Zuki2020

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Thank you for getting back to me affected you are very knowledgeable in this area. Just a quick question is this a sign of ALS, when swallowing it feels like when I am swallowing my soft pallet and my tongue is getting stuck to it. Thank you for your help. I have read so much, Mum is unable to answer my questions. I am very worried.
 

affected

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This is a good last question to ask - no not a symptom of ALS at all. Please try and let this go as you may have something going on, but it isn't ALS. It is also worth reminding yourself that you wouldn't develop ALS at the same time as your mum. Let your doctors guide what needs to be done next.

It could also be worth thinking of your mum really needs your time and attention just now, and start diverting your energy from hyper-vigilance on every little thing you feel, to how much you can do to make her life easier. This can be great therapy for someone anxious, and can only be good for her. You will never regret giving her as much time and love as you can :)
 

Zuki2020

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Thank you so much for responding to my concerns, I'm trying my best to release my anxiety, what you share and your knowledge is comforting for me. My mum is beautiful.
 

Zuki2020

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I know I have posted on here before, alrhough woyld like to know if this is a symptom of als. I have had terrible anxiety, my mum was diagnosed with als a little over 18 months now. My symptom is that I have a terrible dry mouth and when I swallow my saliva it feels hard to get down, was wondering if anyone had experience this. My throat sometimes jumps or spasms whuch wakes me at night. My speech is fine, eating and drinking is fine. I'm really worried this is als, mum can't answer my questions.
 

Nikki J

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You have asked this repeatedly. Our answer isn’t going to change. Please devote your energy to your mother. You will never get this time back
 
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