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reanne2489

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Sep 9, 2014
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Learn about ALS
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UK
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Bangor
Hi all,

I apologise from the off for returning, but wanted to post an update and ask for your expert advice re: the findings.

I had been consoling myself with the BFS forum site over the past number of weeks whilst waiting for my MRI and EMG...and this is the latest post I put on there...

Hi all,

As many of you know, I have been twitching since the beginning of September. It is constant in my left leg and occurs sporadically in my right leg, abdomen, shoulders, biceps and left eye.

I had a lumbar MRI = Clean and had an EMG in my left calf only after about 4 1/2 weeks of twitching which also came back clean, just with a sensory abnormality. I don't have any clinical weakness, just some perceived weakness- if I stand on my tip toes on each individual foot I am much less steady on my left leg and feel the strain on my left foot much more.

I am worried still because of the amount of pain I experience in my knee, left calf and arch of my left foot. I have already mentioned that my left leg is thinner than the right- especially noticeable at the knee and around the top of the thigh. I have also noticed that the arch of my left foot, where the pain is, is more inwardly curved than the right...I am soooo worried this is atrophy, which is accompanying the twitching :( I measured around my foot and it's almost 0.4cm smaller than the right and that's ALOT for a foot! I also get stiffness in my toes.

I have been told my pelvis is misaligned and out of rotation [lower on the left side] by my physio but I haven't really done anything to trigger the pain to come on this intensely so I can't separate it from the twitching and accept that it's just an alignment issue...also for foot pain caused by misalignment I have read that it cause flat feet rather than more pronounced arches...

I know BFS can cause aches and pains but this leg size discrepancy, and the NON STOP twitching and now this apparent atrophy in my foot is scaring me that I am going to be one of the unlucky few who exhibit the rarest of ALS symptoms at the youngest of ages. I know ALS is generally painless, but have read of patient cases where they explained that they felt cramps [which I also get in my foot arches] but also of other muscle pain which they felt was down to the fact their muscles were having to compensate for weakness.

I am just so worried, but my doctor has told me to try and ignore the pain, but I find this hard to accept when the pain is unrelenting [especially when at rest] and has no other cause [like an injury] - it accompanied the twitching after about 3/4 weeks of it starting.

Any of your advice would be welcomed.
Thank you
 
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 ...

.
 
Go read the stickies. You'll find your answer there. Stop being lazy and expecting people with limited abilities or time to give you answers to questions that have already been answered
 
>Stop being lazy and expecting people with limited abilities or time to give you answers to questions that have already been answered

Dalvin, very well said! mind if I add that to my 'go away' hotkey:

------ snip -----

Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum. Stop being lazy and expecting people with limited abilities or time to give you answers to questions that have already been answered.

You asked, we answered, so please move on.

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!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
 
Just a thought- I had trouble locating the stickies at first, as it is not a one step process! (Or maybe I just don't know the easy way to get to them. Perhaps one of you more technological gurus could write an easy direction to get to them. I suspect a lot of these newbies give up after looking a bit.). Donna
 
In order to start a new thread on this subforum you must be on the page that has the sticky as the first post in bold letters saying New Members please read before posting. I do not think it can be any more obvious And in less than 2 months it has had almost 3500 views. I don't think the excuse that they did not see it holds water. If you come to a thread to read or answer from the main page you could miss it but anyone starting a DIHALS thread has to be on the page where I think it is very obvious.
 
Last edited:
Max, feel free to add it
 
I agree the sticky could not be more obvious as the twitchers here have to start at the top of the forum to click Add new thread. Some will try to say they went to click on the sticky link and missed by a fraction and got a new thread instead ...


Seriously reanne we can't help you.
 
>Max, feel free to add it

added!

I just had a thought ... do you think it would be more effective and less inflammatory if I used the hot key in a visitor's message or directly in the post? After all our objective is to have the go elsewhere, not to embarrass or be mean ... thoughts?

Nikki, we had a thread discussing this but I can't find it. move it if you want ...

here's the new hotkey:


Well -- Several of us have tried to share our experience with you and your fears.

The consensus seems to be that you need to resolve your issues with medical professionals and/or do not have ALS.

We do empathize with your fears, but there is no more we can help you with at this time.

This note is not to deter you from your investigations, but just not on this forum. Stop being lazy and expecting people with limited abilities or time to give you answers to questions that have already been answered.

You asked, we answered, so please move on.

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!

Anxiety can be a real problem that can endanger your physical health. Make sure you tell your medical practioner what you are feeling as well as how you are feeling.

No need to reply. Goodbye and best regards.


-----
Max
-----
onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...
 
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