New mom with ALS symptoms

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Klj2018

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Joined
May 23, 2020
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Reason
Learn about ALS
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00/0000
Country
US
State
CO
City
Brighton
Hi everyone, first of all thank you so much for taking the time to read this and hopefully respond. I have a 13 month old daughter and I haven’t been feeling well for the last 7 months. I am so worried that I am not going to be here to raise my baby.

This all started October 2019 with a weird dull ache in my upper back and around my rib cage. During this time I also started to have diarrhea and nausea with eating along with night sweats. I am really concerned about the night sweats as I’ve read others say that this was also one of their earliest symptoms. I began to get the same dull achy feeling in the back of my hamstrings. I also unintentionally lost 10lbs during the first three months of this. I had a colonoscopy, endoscopy, abdominal and chest pet/ct scan, a lumbar spine MRI, and lots of blood work done. All came back normal. I also had my gallbladder removed and had exploratory surgery, this was all normal as well. At this point I did not even think this could be a neurological problem. After surgery I continued to have the dull achy pains around my rib cage/back and hamstrings as well as in my arms. I also began to have muscle twitching through out my body. It is mostly in my feet and legs but I do also get the twitches in my abdomen, back, arms, shoulders, and eyelids. I am going on almost 4 months of the twitching. This is when I found out about ALS after googling my symptoms a couple weeks ago.

I have had no muscle atrophy that I can see but the weight loss makes me think that I actually do. I also can not gain back any of the weight even when eating in a calorie surplus, which is abnormal for me. The achy feeling is worst upon waking up or after physical activity. I don’t notice any weakness but I do notice that I have developed intolerance to exercise, I feel like total crap for a few days after doing a work out. I have also been abnormally tired to the point where I feel like I can’t wake up in the mornings which is also really unusual for me. One other thing I noticed was that I have had multiple pinched nerves in my back during this time. I have read a few stories on how others developed ALS and noticed a lot of similarities in my story. Does this sounds like ALS to you guys? I will be meeting with a neurologist this week.
 
Huge congratulations on your lovely baby.

Great news - not a single chance in the world you have ALS. Twitching means nothing at all, and all that stuff you feel have nothing to do with ALS. Cherry picking through stories online is never good.

Have a really good read here, read it twice as there is a lot to take in.


Then go back to your doctor and ask what is next. Your doctor is the only one who can work through this with you. There is nothing that would suggest a terminal illness, particularly not ALS. Please let that go and let your doctors figure things out. I'm afraid some things do take time to figure and resolve. That doesn't mean they are awfully sinister.
 
No, it doesn't. I am sure the neurologist will be reassuring on that point.

If you had a normal lumbar spine MRI, not sure how you are getting to "multiple pinched nerves" in your back, but disk disease is not related to ALS.

Pregnancy, motherhood, and abdominal surgery can take their toll in many ways, including reduced quality of sleep, that could lead to the issues you describe. You might ask the neurologist about a sleep study. Nutrition, hydration and stress are also worth consideration.

Best,
Laurie
 
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