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Author Topic: Please help me with my als fear  (Read 258 times)

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Offline Mumofthreeboys

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Please help me with my als fear
« on: June 27, 2014, 01:52:50 PM »
Hi everyone.
I have a very bad fear of als. I am a female, 29, have three young boys and my youngest was born with an undiagnosed medical condition and has had 4 surgeries so far so am extremely stressed and worried at all times.

My als fear started 2 years ago when I saw a nutritionist who gave me some false information regarding a blood test I had. She basically made me think that I had the SOD genetic mutation that causes familial als.

I have been assured countless times since then that my blood test does not indicate that at all but I cannot seem to shake the fear away.

I have had BFS since all of this.

Around a month ago I started having a buzzing sensation in my right foot. As well has lots of pins and needles and awful stabbing pains in my fingers toes and occasionally throughout my body. I saw a neuro, had a full brain and spine MRI which came back clear and also a nerve conduction test only in my arms though and that was clear as well.

After the results the pain subsided a bit but the buzzing is still there. More constant than it was in the beginning. I also have pain that I think is plantar fascitis (and I don't know why and don't want to look but am convinced I have seen that linked with als) I get pain in my heels but recently having a pain in my left ball area of my foot where the buzzing is! I am also convinced that the ball of my foot has atrophied slightly as it is smaller than the left foot. I do apparently have very flat feet.

I am so scared that this buzzing and pain is the beginning of als. I cannot rationalise myself out of this one! I am so scared, can't focus on anything and am so scared of leaving my boys behind especially as my baby is not well and I need to be here for him ;(

The fact that he buzzing hasn't disappeared and if anything become worse is scaring me, along with the pain.

I find myself standing on my toes all day now to check I am not becoming weak as well as constantly pressing my feet to feel the difference. I am also staring at them like a maniac to see if there is any minor twitching that I cannot feel.

Please help reassure me. I am in such a state. Don't know what to do anymore, feel like checking myself in to a phych unit as I feel like I am just losing it.

Sorry if any typos, am on my phone.

Thanks to anyone who reads and responds.

Xxx
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Offline JER2911

  • Jeremiah 29:11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.
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Re: Please help me with my als fear
« Reply #1 on: June 27, 2014, 02:34:30 PM »
Hello! 

I try to catch all the ALS post that I can.   Please read my story here in this link.  You have to scroll down a bit to get to my response to the poster of the original thread.  I believe there are two or three post in this link that describe my journey with ALS fear.  Hope something in there helps you!!

http://www.anxietyzone.com/index.php/topic,50829.msg300910.html#msg300910
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Matthew 6:27  Who of you by worrying can add a single hour to his life?

Offline Nk904

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Re: Please help me with my als fear
« Reply #2 on: June 27, 2014, 02:58:20 PM »
I wish all I had was pins and needles. Do you twitch? I do 24/7..
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Offline ShawnW

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Re: Please help me with my als fear
« Reply #3 on: June 27, 2014, 03:24:24 PM »
I'm not sure if I have ever heard a story that sounds less like *** than yours. 
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline Nk904

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Re: Please help me with my als fear
« Reply #4 on: June 27, 2014, 03:27:05 PM »
Shawn, did my pictures ever come up?
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Offline Mumofthreeboys

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Re: Please help me with my als fear
« Reply #5 on: June 27, 2014, 05:49:28 PM »
Thank you for your replies.

I read your story Jer thank you. Very reassuring and I am glad you made it out of that awful place you must have been.

I don't have twitching constantly but have it sporadically throughout the day.

I am not that worried about the twitching, it is the constant buzzing and pain I am getting in right foot. And that foot also seems to be flatter than the left.

Why so you feel that his is a story that sounds the least like ***?

Xx

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Offline ShawnW

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Re: Please help me with my als fear
« Reply #6 on: June 27, 2014, 06:24:39 PM »
Why do you derail other people's posts?  This post isn't about you.  Yes, I seen them and no I won't give you an opinion on your pics.  I'm not trying to be a prick but you will need to get your reassurance elsewhere.
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My insight, thoughts, experiences or advice that may be posted in this forum are not meant as a substitution for the advice of your physician.

Want to know how to address your anxiety?
http://www.anxietyzone.com/index.php/topic,93402.msg521266.html#msg521266

Offline Nk904

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Re: Please help me with my als fear
« Reply #7 on: June 27, 2014, 07:41:07 PM »
I just wanted someone with a medical background to look at it, that's all. Sorry for de railing this forum. I also asked her a question.

What parts of your body twitch, op?
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Offline Lars Thorwald

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Re: Please help me with my als fear
« Reply #8 on: June 27, 2014, 09:13:00 PM »
Mum--
Your buzzing and twitching sounds like anxiety. Nothing against your nutritionist but he/she isn't a doc. You've had tests and they're fine, right? I've had that buzzing/vibrating/twitching... first started 7 or 8 years ago. I'm still here. My doc said it's anxiety. Enjoy your sons...they grow up too fast. My oldest just graduated college and seems like just yesterday I was teaching him to ride a bike. Take care...
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"For days after death, hair and fingernails continue to grow but phone calls taper off." --Johnny Carson

Offline thenomnomnomicon

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Re: Please help me with my als fear
« Reply #9 on: June 27, 2014, 09:29:24 PM »
Hi everyone.
I have a very bad fear of als. I am a female, 29, have three young boys and my youngest was born with an undiagnosed medical condition and has had 4 surgeries so far so am extremely stressed and worried at all times.

My als fear started 2 years ago when I saw a nutritionist who gave me some false information regarding a blood test I had. She basically made me think that I had the SOD genetic mutation that causes familial als.

I have been assured countless times since then that my blood test does not indicate that at all but I cannot seem to shake the fear away.

I have had BFS since all of this.

Around a month ago I started having a buzzing sensation in my right foot. As well has lots of pins and needles and awful stabbing pains in my fingers toes and occasionally throughout my body. I saw a neuro, had a full brain and spine MRI which came back clear and also a nerve conduction test only in my arms though and that was clear as well.

After the results the pain subsided a bit but the buzzing is still there. More constant than it was in the beginning. I also have pain that I think is plantar fascitis (and I don't know why and don't want to look but am convinced I have seen that linked with als) I get pain in my heels but recently having a pain in my left ball area of my foot where the buzzing is! I am also convinced that the ball of my foot has atrophied slightly as it is smaller than the left foot. I do apparently have very flat feet.

I am so scared that this buzzing and pain is the beginning of als. I cannot rationalise myself out of this one! I am so scared, can't focus on anything and am so scared of leaving my boys behind especially as my baby is not well and I need to be here for him ;(

The fact that he buzzing hasn't disappeared and if anything become worse is scaring me, along with the pain.

I find myself standing on my toes all day now to check I am not becoming weak as well as constantly pressing my feet to feel the difference. I am also staring at them like a maniac to see if there is any minor twitching that I cannot feel.

Please help reassure me. I am in such a state. Don't know what to do anymore, feel like checking myself in to a phych unit as I feel like I am just losing it.

Sorry if any typos, am on my phone.

Thanks to anyone who reads and responds.

Xxx

It isn't.

This is not ***. I understand your initial anxiety over FALS, but you've learned you're not at risk and it is imperative you let this fear go. You can PM if you'd like and I'll happily explain, within reason, why this isn't *** in detail, but do recognise you must overcome your fears and no one else is able to do that for you.

My knowledge of FALS is limited, but as far as I'm aware it occurs quite often in families affected and would be no secret to you if you were at risk.
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Ph'nglui mglw'nafh Cthulhu R'lyeh

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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