Please help..

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ik2014

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Hello,
I am a 31 year old mother of two small children. I started having weird sensations in my leg and hip last august. Doctor ordered test and I was lacking Vitamin D. In January, I saw her again for same thing. Waking up and my arm was asleep and it took awhile to wake up. She suggested chiropractor since my baby was small, I could've been sleeping wrong (nursing mother). Fast forward to Feb. Met with her again for follow up blood test and told her symptoms were same and discussed vaccine (again breastfeeding) she encouraged me to get it. So I did. Days later I started twitching in my lip and it's spread throughout my body. It's constant and does not go away. Also have weird sensations that come and go. (burning, tingle, pain, pinch feeling in shoulder)

I was referred to Neurologist and he did physical exam and told me I had BFS and not to come back unless a limb stopped working. He was very dismissive and blamed me having two small children and stress playing a factor. I decided to have a second opinion by a respected Neurologist who would not give a second opinion because the Dr prior has PhD in MND. She basically said "If he said you don't have it, you don't." They both ran blood test and all came out good. High cortisol level and b6. She also did an EMG in both arms and said I have mild ulnar compression and possible fibromyalgia. She said my EMG was great and to follow up if I want to see a surgeon (if symptoms don't improve). I went back to first neurologist for insurance purposes and he did another physical and said I was fine and the EMG was no concern. I'm not sure what else to do. I do not have weakness or atrophy per their physical test and blood work. Going on 7 months and twitching has not got better and I'm having the same sensations that don't go away. Any information is greatly appreciated. I have been following this site since February and did not want to post. My heart breaks and I pray for an ALS cure. Please accept my sincere apology if I am offending you.
 

ik2014

New member
Joined
Jul 16, 2021
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Learn about ALS
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07/2021
Country
US
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lgelb

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Congrats -- you don't have ALS, nor is there reason to suspect any neuromuscular disorder. Not sure why you would think otherwise.

Twitching and sporadic sensations, as you will have read here and elsewhere, is not a concern for ALS unless accompanied by specific other signs that you fortunately don't have, and your EMG confirms that you have nothing to fear. You can look on YouTube for exercises to help mild ulnar nerve compression and get referred to a hand specialist if needed. You can also make sure your diet is balanced in terms of B vitamins.

Many nursing moms are low on iron, B vitamins (you can be high in some while low in others), and, of course, sleep, which magnifies all your feelings. A low level vitamin D supplement and a low dose (100% RDA) B complex may be worth trying, but in addition, nothing substitutes for rest.

Best,
Laurie
 
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