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Author Topic: Please help me with my als fear  (Read 409 times)

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Offline Mumofthreeboys

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Re: Please help me with my als fear
« Reply #10 on: June 28, 2014, 02:38:28 AM »
Thenom - not sure if you will see this but I don't seem to be able to pm you. I probably haven't quite understood how to do so yet. I would like for you, if you don't mind, to tell me in a bit more detail why this buzzing and cramping in the sole of my foot is nothing to worry about. It is so very frustrating to focus on it all day and whenever I wake in the night.

Lars - I haven't had a blood test to rule out the genetic type as I am too scared and would ironically not want to know even though I keep asking if it is what I have.
I had a very elevated SOD serum level (just the actual SOD in my blood stream) and hence nutrionist said that means your gene must be mutated. I have had assurance from several drs including a professor who specialises in the genetics in motility disorders and in particular mnd. He said that he would actually want there to be a connection so they could derive an easy test to find out if someone was going to get mnd. But said there is no link and the concentration of SOD can increase and decrease throughout the day. I obviously take a lot of comfort in that but still have that tiny little voice that says but what if.

I wish I had never seen that nutrionist and I wish I had never ever read up about als. Am worried it is going to haunt me forever.
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Offline Mumofthreeboys

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Re: Please help me with my als fear
« Reply #11 on: June 28, 2014, 09:00:13 AM »
Thenom. Thank you so much for your messages. I really wanted to message you back but am not able to. Maybe I need to be a member for longer before I do so?

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Offline thenomnomnomicon

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Re: Please help me with my als fear
« Reply #12 on: June 28, 2014, 01:47:25 PM »
Probably. I assumed as much. And it's no problem.
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