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Knicole71597

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Jul 22, 2021
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Reason
Lost a loved one
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00/0000
Country
US
State
OH
City
Canton
Hello, I really debated posting this because I don’t want to make anyone mad for asking a question. I read the faq’s before posting but am still looking for answers. My dad passed away from ALS in 2010. As far as we know he is the only one in the family with it and his doctor labeled it back then as sporadic.

In 2013, I had a complete neurological workup including an EMG due to some symptoms/anxiety I was having. The neurologist told me everything was perfect and that I did not have ALS. He also told me I would never have it because my results were good.

fast forward to recently, I was having numbness in left hand. I had a nerve conduction study/EMG and it came back abnormal and stating mediun neuropathy due to carpal tunnel syndrome. I had surgery, no longer numb.

In December I began having severe back and neck pain, neurosurgeon did MRI of cervical and lumbar spine. Bulging disc and some spondylosis. He said I have brisk reflexes and referrred me to a neurologist. I am now having horrible twitching in my thumb (same hand as surgery) that has been getting worse every day and waking me up at night. Also having eyelid twitching.

i am really really scared. I know twitching alone probably isn’t anything but the hyperflexia along with it?? I have a neurologist appointment but I’m not able to ge in until October. Any advice would be so appreciated.
 
I'm so sorry for the loss of your dad.
You really know in your heart that this is your fear gripping you, rather than actual ALS symptoms as you have been cleared several times. You can get help if you go talk to your doctor openly. I wish you a full recovery from this fear.
 
Hi, K.

I am sorry for the loss of your dad to this horrible disease. Please do not think that by asking one question, folks are going to get upset with you. When forum members patience wears thin, it is with folks who ask the same question more than a couple of times and come back a third time to ask "just one more question". I am glad you asked your question because I hope this feedback will give you some peace of mind.

Your symptoms are not indicative of ALS onset, and you must know this from having watched your dad. Your fear is perfectly normal, and often people who have lost loved ones to a certain disease, may even think they are starting to manifest the same symptoms. You are not, thankfully, experiencing any onset of an MND disease. Grief is not linear, and can come and go for many, many years. Be gentle with yourself and when you think you are feeling like you may get ALS, take a deep breath and tell your self that the odds are astronomical that you would get the same sporadic disease as your dad. Also, it never hurts to talk to a grief and loss counselor. They can give you excellent coping tips.

Take care
 
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Thank you so much for your response. I appreciate you saying that and taking the time to reassure me. I hate that I get so worked up sometimes about it.
 
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