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Kitcatcoo

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Hi All

First of all thank you for all of your support and taking the time to answer our questions and helping us understand what to make of our symptoms.

My situation started in early January where I was having sharp, pin like pain in my left thigh - I blamed it on exercise at first but now noticing my left leg is getting weaker, it’s shaky at times, very difficult to balance on it, weaker than right leg, and occasional twitching. I don’t know if there is any relation but noticing some lower back pain - but may be something that’s worth noting? Trying to get a neuro apt but with insurance I have it’s slow w referrals etc but hopefully will be going soon. Also I read the sticky at the beginning, but also read the other pages with recent diagnosis and some folks started about general leg weakness, back pain before more serious symptoms arose so not sure what to make of my scenario. Any info is greatly appreciated!
 
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Nikki J

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My first thought is a back issue. Everything you said is completely consistent with that. I am leg onset. Never a hint of pain before or now.

Did you not go to your pcp? I would not be asking for a neuro referral. If you have confirmed weakness by your doctor you should have a lumbar MRI. Even those of us without pain and other clinical signs of ALS get mris to rule that out
 

Kitcatcoo

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My first thought is a back issue. Everything you said is completely consistent with that. I am leg onset. Never a hint of pain before or now.

Did you not go to your pcp? I would not be asking for a neuro referral. If you have confirmed weakness by your doctor you should have a lumbar MRI. Even those of us without pain and other clinical signs of ALS get mris to rule that out
Thanks Nikki for the quick reply! My PCP did some physical tests and said they don't think its a back/pinched nerve, and said to wait it out, but just seems to be getting worse and they said if it would make me feel better they'll do a referral....new at all of this, but thinking the neuro could run the MRI to see if anything shows up to help manage the situation. Thank you for keying in on the pain aspect, that's super helpful in knowing.
 

Vincent

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It could be anything or nothing. I have no idea how many times I was asked about pain, numbness, pins and needles.I had none of the above. So at this point pain is your best friend. It points away from ALS. Get your back looked after, get plenty of sleep and drink water.
I wish you luck.
Vincent
 

Kitcatcoo

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Thanks so much Vincent. I appreciate the info you shared and definitely will follow up w my back issues...and will ask about the weakness/twitching during that assessment - hoping it’s all related. I wish you the best, again appreciate the time taken to respond to my query
 

Kitcatcoo

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Hi All

Thank you again for your replies and also for helping us figure out what’s going on and what dto ask our doctors !

So left leg is twitching, foot cramping and general fatigue getting worse - went to Neuro (resident - otherwise would of been 2mos wait) and he didn’t seem concerned w muscle strength but did ask for EMG for tightness/cramping/twitching ...getting worried again ..:.also those posts on PALS/recently diagnosed sound all too familiar - general fatigue in leg, cramping etc

I do have a EMG scheduled for 4/1 - April fools lol - hopefully it turns out ok and I can then use the data to figure out if it’s something else? Again any input of what I should ask for, look for, also worth noting left leg does look smaller than right but maybe it was always that way and just noticing now? So confused and don’t know what to make of this situation. Again. Thanks for all your insights and help!
 

lgelb

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The EMG will look for any abnormalities of nerves and muscles, not just ALS-related. But if it's negative, a very good thing, it is not going to turn around and point you in another direction. That's where a good PCP in conjunction with any good specialists needed comes in.

The hallmark of our recently-diagnosed stories is weakness (clinical, self-evident, not a feeling but fact), not cramps or general fatigue. So I'm not sure what you think you are reading. Don't chase anything. After the EMG, you will know more.

Best,
Laurie
 

Kitcatcoo

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Hi Laurie

Thanks for your reply, really appreciate the insights you shared - will be happy when the EMG is done, and hopefully some clarity on what’s going on ☺
 
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