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hoek67

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Hi, I've been unwell for a few years and no one has been able to put a handle on it so to speak.

I have been aware of MND for ages as it's been getting a lot of press and the diversity of people getting it seems to be expanding.

I get VERY tired all the time for no reason, after being up for 4+ hours I have no option but to lie down... completely stuffed. This alone interferes with my life a lot.

I'm basically a single dad of a 12 yo daughter as my wife is in other care 90% of the time because of mental illness she acquired after child birth. I have real problems looking after myself and daughter at times so it's VERY hard when my wife is home.

Anyway, I have noticed recently I'm not able to clench my hands with any real pressure and in the last month I'm always getting very bad pins and needles when sleeping. This can effect both arms and/or both legs. I also noticed when hanging clothes out on the line I have no strength in my elbows to put the clothes up and winding the hoist up which is usually easy with 1 hand now takes 2 and some effort. Also standing in 1 spot for a while (a few minutes) makes my legs hurt to the point I need to sit.

Simple things like putting my socks on have become harder because of pain and inability to lift my feet up without grabbing them.

I've just turned 47 and don't drink, smoke or do drugs.

From what I know a normal "standard" blood test will not diagnose MND and it has to specifically be asked for.

I have been thinking seriously about getting life insurance and hoping I have to pay them for the next 20+ years.

If I had MND I could accept it, but the thought of telling my family does my head in so to speak.
 
>I have been thinking seriously about getting life insurance and hoping I have to pay them for the next 20+ years.

good idea in every case, otherwise:

Hi -- ALS/MND is a scary disease to consider/fear. We empathize. This note is not to deter you from your investigations, but just so thoughts on how we can help each other ...


Here are some first considerations that may help:

#1 - Read the STICKIES at the top of this forum. Many questions are answered there. 99% of new questions are addressed.


#2 We are not doctors or diagnosticians, but people who are dying from or caring for people with ALS. Some of us have to type with one hand, one finger, via dictation, or even with our eyes, so reading/replying to the anxiety-ridden can be very tiring.


#3 if you think you have a motor neuron issue, see your Primary Care Provider and get a referral to a motor neuron qualified neuro, note: most are NOT ALS/MND (Motor Neuron Disease) experienced!


#4 an EMG, properly done, is the gold standard test for ALS. But also, an abnormal EMG can indicate HUNDREDS of other, non-fatal, diseases. So listen to your doctor.


#5 ALS does NOT present with pain, cramps, or fatigue. In ALS, you feel perfectly normal but your muscles simply won't work. Typically, the first sign of ALS is a foot or a hand that inexplicably just won't lift up. It doesn't hurt or feel weak, it just is limp. That is paralysis.


#6 ALS is about failing, not feeling, so forget the "feeling" symptoms


#7 If your main issue is twitching go to the bfs forum. If you have weird neuro symptoms try neurotalk. There are also forums for health anxiety.


#8 Your doctor is wise to look at other diseases. ALS is rare. In order for it to be ALS, it has to be nothing else.


#9 Many of us cough/gag/choke and/or can no longer speak. It is difficult to have anxious people constantly chasing this disease, when we can't escape it. There seems to be this cult of ALS wannabees/groupies. You don't want to fall into that bucket do you?


#10 Anxiety can be a real problem that can endanger your physical health. It is what leads many folks here to this forum -- it is a self-fueling fire. Try to avoid using google and/or this forum if you can -- if you cannot stay away and off this forum it should tell you something important!


Lastly, if you are still interested, go to alsa dot org or mda dot org ...


We sincerely hope you do not need to be here! But find out first. If you do need to be here let me say "Welcome, sorry you are here!"


-----
Max - Monday, August 18, 2014 12:03:01 PM
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Pain pins and needles symptoms in your arms and legs. If you add these up to be MND it is like 2+2=5 you are wrong. Read the sticky at the top of this forum which is where you should have posted to begin with ( I moved your thread)
You have a lot to deal with on the home front get medical attention for your issues but forget about MND
 
- I get VERY tired >>> Most people with ALS report that they were leading active, healthy, and happy lifestyles prior to being diagnosed. Not tired at all.

- not able to clench my hands >>> A problem, but probably not ALS.

- very bad pins and needles >>> Definitely not related to ALS at all.

- no strength in my elbows >>> Curious. But the beginning stage of ALS wouldn't affect both elbows at once.

- my legs hurt to the point I need to sit. >>> ALS doesn't hurt.

- inability to lift my feet up without grabbing them. >>> I suspect you're overweight, like me.

- I've just turned 47 and don't drink, smoke or do drugs. >>> You're missing out!

- a normal "standard" blood test will not diagnose MND >>> Actually, there is no test for ALS. They test you for everything else, instead.

- getting life insurance >>> I recommend it. You don't have ALS, but I think insurance is needed when you're pushing 50 and you've got a child.

Fortunately, you didn't describe anything that would be ALS related. It sounds like you need a vacation more than anything. Get a doctor to check your hands and elbows--you might have a pinched nerve, a vitamin deficiency, or underactive thyroid. Who knows? Sorry, I can't diagnose you. But I say with confidence that you don't have ALS.

Good luck.
 
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