Old 11-22-2014, 10:59 AM #1 (permalink)
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Default Thank you in advance for anyone who reads and gives advise on this

I apologize if this is very long. I really appreciate everyone taking the time to read it and answer as they can. I will try to condense it all as best I can -

2 weeks ago I started with some lower back pain on my left side, it has subsided but I still feel a pinch in my lower back & buttock. I also had a pain in my neck that went down to my shoulder and arm on the left side and that was with a headache as I do suffer from migraines I assumed it was from one I was having. When the migraine went away so did the shoulder and neck pain.

About 10 days ago I started to notice I would do a brief stumble where I would catch myself with my feet. Like as if I didn't properly lift my feet up so my shoe would make a squeeking sound on the floor. Then I noticed that my left leg felt a little off to me, kind of loose around the knee and tired at times. This happened a couple times last week and then again one yesterday.

The next day I had a few muscle twitches and those only increased as the days went on. Now I have them all over my body but mostly in my legs, feet and left arm. Sometimes in my right arm and stomach.

This week I also started to also notice that my leg or arm would jerk slightly and move as if it had a mind of it's own.

I have also been having tingling fingers and toes and my feet feel cold at times, both of them. Also if I sit for a while my left leg falls asleep.

I went to 2 different neurologists this week. I suffer from anxiety issues that I am trying to treat but having a hard time finding the right person. The first neurologist felt that my pains and sensations could be related to my anxiety and migraine pressure points. I didn't believe him and he didn't feel any tests were necessary so I sought out another opinion who didn't know what the problem was but didn't think it was ALS after doing an exam in his office (are those even efficient in detecting ALS?) and said if I would like he would send me for an EMG to ease my mind. I think my anxiety is clouding their ability to see my symptoms. Also, what concerns me the most is that the second doctor noticed more of a brisk reflex on the left arm and leg and didn't think anything of it...I found this extremely puzzling as I know it's a sign of the disease and when I asked him he told me not to worry about it. No one is perfect and that what I had done in the neuro exam was not what someone with ALS would be able to do and that his gut told him that I didn't it.

Yesterday my left arm started to feel weakness and my hand feels tight. I started to feel this way last week also but then it went away. It wasn't as bad as now and also now the left arm started to have some muscle pain and cramping between my elbow and wrist. My right leg also started to have some pain this morning.

Lastly, today I also have some of the buttocks pain on the right side that goes down my thigh. Both of my thighs feel tender. All of the muscles that hurt me also feel tender to touch. Also, I woke up with some toe pain in my left foot. It feels sore. Would these be a symptoms?

I have been trying to repeat some of the tests from the neuros office at home so I don't know if I am over working my muscles and that I giving me the pain, but then why isn't my right arm hurting...my family is convinced it is all in my head. I am mostly disturbed and worried about the brisk reflex, especially since it was only on one side and all the cramping.

I have 4 young children and am 35 years old. I read that stress could cause the disease to progress rapidly, can it travel and progress this rapidly if I do have it in 10 days? I have been under a tremendous amount of stress, even from before I started to notice these symptoms.
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Old 11-22-2014, 11:08 AM #2 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

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 ...

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Old 11-22-2014, 01:53 PM #3 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

Honey truly you can calm down now.

As Max said, please do read the sticky it should completely put your mind at rest.

You said I think my anxiety is clouding their ability to see my symptoms. I think you need to actually express this as I think my anxiety is clouding my ability to see what my symptoms are

So I would like to assure you that you are NOT displaying any symptoms of ALS, but you are in a highly anxious state and this is a genuine issue that needs a doctor to work with you to fix. We don't know much about other diseases, but we do know all about ALS, and after reading your post carefully I can honestly say this to you.

Please stop coming to forums like this, stop using google to try and diagnose yourself and also you can't perform those neurology tests on yourself. All those behaviours are signs of high anxiety.

I sincerely wish you all the best in solving your health issues.

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Old 11-22-2014, 03:18 PM #4 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

Allow me to pile on. Max and Tillie have given you good advice.
I'll evaluate your symptoms one by one.

back pain...pain in my neck...tingling fingers and toes...leg falls asleep
>>>THESE HAVE NOTHING to do with ALS. ALS doesn't affect sensory nerves, only motor nerves. So you don't "feel" ALS.

brief stumble where I would catch myself with my feet
>>> COMMON PROBLEM IN MANY DISORDERS. Not necessarily ALS.

muscle twitches...all over my body
>>> THIS IS NOT THE WAY that ALS attacks. ALS affects one muscle at a time, in serial order, not the whole body at once.

leg or arm would jerk
>>>VERY COMMON In healthy people. But not in ALS. Could be Restless Legs Syndrome.

pains and sensations could be related to my anxiety and migraine pressure points.
>>> MOST PROBABLY TRUE

are those tests even efficient in detecting ALS?
>>> ABSOLUTELY. Neurologists understand the various nervous systems very well.

an EMG to ease my mind
>>> WASTE OF INSURANCE MONEY.

brisk reflex on the left arm and leg and didn't think anything of it...I found this extremely puzzling as I know it's a sign of the disease and when I asked him he told me not to worry about it.
>>> HE'S CERTAINLY RIGHT.

stress could cause the disease to progress rapidly
>>> NO ONE REALLY KNOWS.

can it travel and progress this rapidly if I do have it in 10 days?
>>> NO. YOU DON'T HAVE ALS

You worry way too much. Try to concentrate of finding out what makes you worry. You don't have ALS, nor any motor neuron disease, I'm sure. Certainly you need a therapist to help you with your anxiety.
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Old 11-23-2014, 01:23 AM #5 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

Permit my simplistic conclusion: two weeks?
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Old 11-23-2014, 09:26 AM #6 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

Thank you everyone for taking the time to read my post and answer my questions
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Old 11-25-2014, 06:59 AM #7 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

Quote:
Originally Posted by Mediasmart View Post
Permit my simplistic conclusion: two weeks?
Sorry - did you mean this to mean that it was too quick or it's possible? I'm sorry Im just still so uncomfortable and feel like now my right leg is also feeling the way my left leg. Have pain in both calfs and arms at times. It comes and goes. Also yesterday I went to another neuro that one of my others doctors wanted me to go to and he said that I have brisk reflexes in both legs now and was unfazed and this concerns me. I told him I don't think I have always had that and the last doctor only noted it in one but he wasn't worried since I was able to pass his office neuro exam and said last time I was probably holding back. I hate bothering all of you when you are already dealing with so much, so hate to even ask. I understand if you are unable to reply and appreciate all the time you take to answer all of us.
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Old 11-25-2014, 07:06 AM #8 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

You DO NOT have ALS. Your doctors would have noticed if you had ANY symptoms of ALS and ordered further tests. Get your anxiety treated and go away
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Old 11-25-2014, 11:08 AM #9 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

I will....I'm sorry
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Old 11-29-2014, 10:58 PM #10 (permalink)
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Default Re: Thank you in advance for anyone who reads and gives advise on this

My mom has ALS and I know she is extremely worried that it could be familial. We do not have a family history of that so, while I know it might put her mind to rest to know for sure, I don't plan to be tested. Well, since I'm here... Would you want your kids tested? Would it have been any different if you had been tested sooner?

That being said, I was also worried when I was reading those "feelings" because I too experience a lot of those feelings. You all know what you are talking about and I appreciate your honesty. I am even more certain that I do not need to worry about being tested.

Thank you. I really learned a lot from your comments.
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