Very concerned...

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Paradise14

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Aug 23, 2020
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Reason
Learn about ALS
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00/0000
Country
US
State
DE
City
Dover
Hello everyone,

I gave birth 9 months ago. 2 months after delivering, I started having right sided facial tingling/twitching and right shoulder spasms and tingling, this subsided after 2 months.

Then I started having right hip joint stiffness that progressed into body wide twitching. (Big muscle twitches and small popcorn twitches). I developed stiffness and tightness in all 4 limbs.

Then came the cramping....everywhere. Feet, hands, calfs, forearms, thighs. It’s pretty constant and is quite painful. The cramping by far is the most annoying symptom.

My legs feel fatigued, ache, throb and my ankles ache. My one calf has a “hot spotsmall area of twitching that feels like a little bee buzzing under the skin.

My neurologist ordered an emg, but it’s 2 months from now. So lots of waiting. Im certainly nervous and looking for any input from experienced people who know als first hand.
Thank you.
 
It doesn't sound like ALS to me. Did your primary care get blood work? I'm thinking D3, B-12, CBC and Comp. Metabolic just to start. Are you running on empty with the new baby? Proper hydration, adequate sleep, laying off the caffeine?

Twitching is very non-specific and means nothing. My neurologists twitches more than I do and he isn't one bit concerned.

If getting an EMG put you at peace, go for it. Meanwhile, try to take care of yourself and enjoy your new family member.
 
Thank you for your reply, I have had so much blood work over the past couple of months, for basically all that you mentioned and more. Nothing found. MRIs, all negative. I don’t sleep very well because of the cramps, but I do drink nothing but water and take electrolytes. No caffeine.
 
Hi Paradise! You sound like you have a lot going on right now. I can see why you feel frightened. Diagnosing any neurological issues take forever because they are a process of elimination. And now with COVID, everything is taking twice as long! It’s so frustrating. Hopefully they’ll be able to rule everything out for you and hopefully your symptoms will improve by then also. EMG’s are *usually* definitive for ALS, so hopefully that’ll rule out ALS for you! Hang in there and try your hardest to occupy your mind with other things while you wait. Although, I’ve been in your position so I know how hard that is to do LOL!
 
Paradise, we hear from a lot of new moms (congrats!). Iron and B-12 deficiencies don't always show up in bloodwork and are common in/after pregnancy. In turn, they are often implicated in abnormal limb movement especially but not only, at rest and in sleep.

If you are not taking one, I would consider a good multi with iron and/or a 100% RDA B complex supplement -- nothing wild. As Kim says, sleep, nutrition and hydration are key as well. You can also try a few drops of magesium lotion on the "hot spot."

Best,
Laurie
 
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