Very confused.

mevandavis123

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Hi. I’m new to this site. I have not been diagnosed yet but am very concerned that I have ALS. I have read some of the forum and usual symptoms. While I don’t have the typical symptoms I am not sure what else I could have. I’ve noticed my thighs have been smaller a few months ago. Then small pains would occur here and there. I am very active so thought this odd as the pains would come when making a minor movement. Then noticed the muscle becoming very soft and many twitches, mostly on my legs. My legs feel very rubbery and can noticed my gait has changed a bit. This has all happened very fast, just over a month from the pains to noticeable weaker legs. Also noticing losing muscle in arms,neck as well.

I have also been having throat spasms/Hynix jerks every time I am trying to get into deep sleep. I am unable to get a good nights sleep for a week. I have a neurology appointment 7-20 but feel if it isn’t ALS then maybe it could be something as serious as fast as this seems to be effecting me. Thanks for any help.
 

Nikki J

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Until you have been evaluated by a neurologist I will only say there are many many diseases with strange symptoms. Mr Google is not a competent diagnostician. Please go to your appointment with an open mind, relate your symptoms and timeline in a concise manner giving concrete examples of anything you can not do and ask what is wrong rather than trying to focus on one disease. Let us know what the neurologist says
 

mevandavis123

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Thank you. It’s just I’ve lost 6 pounds in a month since I’ve first noticed small pains and can feel soft muscle all over my body now, not just one area. This seems very fast. Should I just wait for the two weeks for my neurology appointment or could this be something else that needs looked at right away?
 

affected

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What we find is that people who 'don't have the usual symptoms' but think they have ALS anyway, turn out not to have ALS.
 

mevandavis123

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Thank you. However, I’ve noticed more muscle loss and a lot of twitching in just the last week. From a first symptom of minor pains a month ago to now lots of twitching and muscle loss without loss of function. Is this something that could be ALS this quick. Just concerned until I have my Nero appointment next Thursday.
 

ShiftKicker

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I am sure your neuro will be able to provide more pertinent information and better feedback than strangers on the internet. The neuro can see you in person and be able to examine you- please understand we are not medical specialists.

Please let us know how your appointment goes. If you have specific questions you want answered by the neuro, it can help to write them down ahead of time.

Take care
 

mevandavis123

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Thank you. I just didn’t know if twitches and muscle loss usually came before loss of use. Was just trying to ease some anxiety.
 

lgelb

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No, they don't. And bodywide issues in a short period of time such as you describe also point away from ALS. I suspect if anything you are looking at something systemic.
 

affected

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read the sticky post again, honestly all is answered there, just slow down a bit and remember twitching means nothing, losing function means everything.
 

mevandavis123

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Actually I’m starting to get very nervous. I can see and feel muscle losing every day in both legs. This is happening very fast. I feel like if it’s something else I need it looked at right away. Want to go to er but don’t know what to tell them?
 

affected

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Whatever it is, ALS never does this. Go see your doctor, please understand we can't do more than say it does not sound like ALS, but we are not your doctor.
 

lgelb

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The ED is a long wait and a dangerous place right now -- that would not be my first move. They are not really geared for what you need, and it is important to ensure your past medical history can be taken into account.

What about your primary care doc? That should always be your first port of call anyway.

You can get a telehealth appointment tomorrow, even, with your own doc or someone in their group, or an online network. If you are in a large group, you might be able to see a triage nurse at the office. Either way, labs and imaging can be ordered if needed, and you can start the evaluation process.
 

mevandavis123

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Unfortunately I am at the er. I had to do something. I know there is rapid onset. I have a feeling that is what this is. Muscle twitching and muscles are softer and smaller , not by a lot , each day.
 

affected

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I hope you get some help there.
Truly, rapid onset is not what you are describing, not even close.
Please discuss your fears openly there so you can get help with whatever is going on.
We won't sit and argue this back and forwards. I hope you get help.
 

mevandavis123

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Thank you. I have no idea what it is but will inform once I do know.
 
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