Yet another worried one...

Hayleywart · 10-26-2009, 10:54 AM

My Mum was dignosed with ALS in August, and is progressing rather quickly. She lives with us and I am her primary carer. I have looked into her family history, and while her dad and her grandad both died young (non MND related) I have also found no evidence of anyone else having it in the family.

However, I just can't get away from the feeling that I have it too - which terrifies me as then my kids may also get it.

My Mum's MND did not start with the text book symptoms. It started with tingling in her hands and feet, weakness in her right arm, but also a lot of pain in her right arm and shoulder. Then the fasiculations came etc, etc.

I have been getting loads of fasiculations, which of course could well be stress. I have also been getting a lot of pins and needle type tingling, but I have read that could also be stress. But now I have started with pain in my arm and shoulder too.

I don't know whether I am just having 'sympathy symptoms' and working myself up into a state, or if there is a chance I my actually have it too. I try to console myself by reasoning that if we do both have it, it is highly unlikely that we would both actually get it at the same time. But perhaps the stress is triggering it off. I can't sleep at night, and get into terrible panicky states which I just can't get out of.

Can anybody offer me any words of wisdom?

Blackpool · 10-26-2009, 02:17 PM

First go see your family Dr. you are under alot of stress being the primary cargiver to your Mom and he can maybe give you something to relieve your anxiety. Once you can get over the panicky feelings, things might look different to you. Peace be with you.

BethU · 10-26-2009, 03:23 PM

I agree. A checkup is in order, but it sure sounds like stress. Caregiving is the toughest job in the world, and a lot of time caregivers skimp on their own rest and nutrition (and with kids, that makes it twice as tough).

Put your health first, and make sure you have all the tools you need to manage the load you're carrying. If there's anything amiss with you, your doctor will spot it. Be sure and explain your situation and your concerns.

Take care.

handinhand · 10-26-2009, 06:34 PM

Hi, I just want to share with you that I was with my daughter when I found out what I have and she was of course so upset and as the days went on I found out that not only was she upset about me and my dx. she was so very very worried that one of you girls might be able to get this. I think we can't help but think of these things. I truely hope that this is what is going on with you. I hope you make an appointment soon with your Dr. It will help so much with all that you are going through right now.... HUgs to you, Linda

Hayleywart · 10-27-2009, 06:21 AM

Thank you all so much for your reassuring words. I have made a GP appoitment for thursday - hopefully she may be able to give me something to help me sleep, as everything is always so much worse in the middle of the night. She may even be able to reassure me that I don't have MND, but no matter how much I can convince myself during the day, by night time it all goes out the window.

I haven't managed to get to sleep before 4 am in almost a week, and I have to get up at 7. I always used to be such a great sleeper! The other night I dreamt that my arms became paralysed and turned into the removable wheelchair footrests from my Mum's chair. Then my hubby decided to leve me because he couldn't take all this, and he got custody of my foot rest arms!!! Does that sound like the dream of a sane woman??

Linda - I like the horse in your avatar - I am a horse fanatic myself.

handinhand · 10-28-2009, 01:38 AM

Hayley, let me know how your appointment goes? I hope he can give you something to help you sleep and calm down. Hugs, Linda I love horses, that is Doc...