Is this ALS?

Posted by ko84 @ko84, Jul 20 6:14am

Hi everyone. Please feel free to be honest with me because I am driving myself crazy trying to figure out what is going on with my body. A few months ago I started having what feel like internal vibrations in my legs and then a month ago I started having twitching and spasms in my feet especially the arches and my thighs and upper back. I also have been having fatigued forearms and cramps in my hands and feet. I can’t sleep at night because my hands and feet cramp so bad and my body twitches in random places. I had an emg done last year that did show denerveration but I havent had a new one. I have an appointment with neurology next week but any insight would be greatly appreciated because I’m stressing myself out. Thank you.

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Our Cousin got recently diagnosed with ALS.
First symptoms were her body reactions got out of balance, she fell.
Second symptoms were speech problems, pronouncing words.
Her speech is slowed down, slurred language.
She got a second opinion at the Mayo Clinic, diagnosed ALS.

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@ko84 I wanted to welcome you to Connect. A lot of patients, myself included, have thought about ALS when there is an diagnosed neurological issue, and because that is a scary diagnosis our mind just latches onto it and runs away with us. We are just programmed to respond to threats as a survival instinct and when there is a threat we don't know enough about, it just feeds the fears. Take a deep breath.... there can be other reasons for muscle twitches. Make sure you are drinking enough water and are not dehydrated. Dehydration can cause muscle cramps. Were you offered any follow up after your past EMG? Have you had any MRIs of your spine that illustrated any problems? For right now, just do your best to relax and perhaps write a list of questions you want ask the neurologist. That is something you can do which will let your brain take a break from worrying about this because you have a "to do" list of questions to ask at your next appointment.

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@ko84
Have you had comprehensive bloodwork done to see if you are deficient or at toxic levels of certain vitamins? I agree that MRI of brain and cervical spine might be needed. My orthopedic spine surgeon who I just saw last week said that EMGs do not diagnose spinal cord/nerve root/nerve health. You can have “normal” EMGs of upper/lower peripheral nerves but still have spinal cord/nerve root/vertebral/disc issues impacting communications from brain to body/body to brain.

Were you told you had upper denervation? Did they suggest getting small fiber neuropathy skin punch biopsy? You may want to ask your neurologist when you see them.

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I did have an MRI of both my neck and lower back. Which are pretty normal. I also had blood work which was all normal.

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I’ve been very concerned about a potential ALS diagnosis twice in my life, for different reasons. Each time, it was negative. I worried needlessly over something that didn’t exist. What I should have been concerned about was my Vitamin B12 deficiency. My previous diagnosis didn’t have proper treatment and it was affecting me in many ways. Thank goodness my second neurologist figured it out.

Good luck with everything. I hope they are able to figure out your symptoms and give you proper diagnosis. I know it’s difficult, but I would try not to read too much into things until you know for sure.

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In order to diagnose ALS blood and urine tests may be performed based on the person's symptoms, test results, and findings from a neurological exam. In some cases, a spinal tap (lumbar puncture) may be performed to obtain the fluid that surrounds the brain and spinal cord called cerebrospinal fluid (CSF) for additional testing.

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My Mom was diagnosed with ALS in 1992 after five days at Mayo Clinic. Today, there are clinics specializing in ALS diagnosis and treatment. Neurologist appointment is a great first step. I would also suggest checking out the ALS website for a clinic near you: https://www.als.org/local-support/certified-centers-clinics/locator

Totally understand your worries, keep following through with doctors! At 73, I've lived longer than my mom with ALS in my periphery. I also have an adult daughter recently diagnosed with MS. We've both been vigilent about noticing and getting medical help for sustained unusual changes. Stay positive, live life on life's terms.

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