Unable to understand muscle twitches that happen mostly at night, but starting to progress to some times during the day

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alott

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Learn about ALS
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Hello, sweet people. Thank you for having this forum. I am five months post a fusion of two of my cervical vertebrae due to disc herniation. I had debilitating nerve pain down my arms and my hands were falling asleep.

For a few months now, I have had muscle twitches that have gotten progressively more frequent and in more areas of my body. First, it started in my thighs. Now, I feel them in my upper arms, my thighs, buttocks and my feet. I mostly notice the twitches at night when I sit in my bed. However, I do feel them sometimes during the day. It is every night I feel them. I am still in recovery, so I am not overexerting my muscles or dehydrated. I am so scared to get tested for anything because of my cervical issues already. I also feel tingling at times in my thighs.

My grasp with my hands has been weak since before my surgery and my hands cramp up at times after holding something too long or doing fine motor things. I just assume it is arthritis or just something that was related to my cervical issues. Will it be conclusive if I get a test for ALS or will it mimic what is already going on because of my surgery and recovery? I write curriculum, so I am in a chair and in front of a computer most of the day. I am trying to get more exercise, but my job is very demanding as well as my homelife with my husband and two kids.

My husband is concerned about me because he feels that I am allowing my fears to overcome me. I started googling muscle twitches and ALS kept coming up. I know there are a lot of reasons for muscle twitches, but I am so scared that ALS is a possibility as well as autoimmune disorders.

Thank you for providing this service to me. I will pray for each and every one of you that run this forum. I already have severe anxiety that is being treated, but this has spun it out of control. My husband is so scared that I am allowing my fears to paralyze me and not live my life with him and my kids. I am trying to hide it, but he says he can see it.

My insurance is having issues with their contracts with my Primary doc so he dropped me as of last week. I am going to a brand new one next week. What should I say to him, and should I be worried if they do some tests? Will it mimic something else life what I got done?
 
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Widespread twitching is not characteristic of ALS onset, whatever alarmism you have read (nor of autoimmune diseases; most often widespread twitching means nothing at all).

Your anxiety and busy life can easily ramp that up, whether you think you are taking it easy or not. You may want to consider counseling, a Zoom meditation group, etc. to ramp back down. There may be an underlying psychological concern that you are not addressing in all that is going on.

Just tell the new PCP what is happening. They are well-equipped to help differentiate any post-surgical issues from anything new. They may want to send you to a neurologist, and the neurologist might want an EMG just to be safe, but that would be more from the standpoint of your spine issues than concern about ALS.

Best,
Laurie
 
I am sincerely sorry for not reading. I just took the time to read and I almost cried. I am so sorry for what I have done in haste and selfishly, and for what you are going through. Prayers and please accept my apology.
 
Hey it is no big deal. I hope it helped allay your fears. Good luck with your new pcp
 
The onset of ALS/MND may be so subtle that symptoms are overlooked or misread. The earliest symptoms may include:

  • Muscle weakness
  • Muscle twitches (fasciculations)
  • Cramps and/or tight and stiff muscles (spasticity)
  • Muscle loss and/or atrophy
  • Slurred and nasal speech
  • Difficulty chewing and swallowing
  • Excessive choking
  • Excessive shortness of breath
  • Unintended weight loss
  • Hand or leg weakness
  • Problems with balance or walking
  • Fatigue
  • Diminished musculature between forefinger and thumb.

It's very difficult to detect ALS sometimes. Fasciculations/twitches were the first symptoms I had. It took 4 years for my diagnosis, and the specialist 2 years once the question arose.

Advice; Go see a neuromuscular specialist. Many of them are working MS or Parkinson's, and ALS centers. It will probably take months to get in for the 1st appointment and depending on your insurance, you may need a referral from your general practitioner.

Anxiety is a big one when folks are facing the unknown like this. Meanwhile, it could be dozens of other common or rare diseases causing your symptoms, so take your time, relax, and work on seeing a specialist that can help you.

The best thing is communicating, don't bottle up your fear because eventually, it will explode.
 
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With all listed above it's important to also point this out...

Below is a list of early symptom mimics that make a diagnosis
of ALS/PLS a process of observation, testing, and elimination.

The first two are the most common neurological determinations.

Anxiety
Benign Fasciculations.
Myasthenia Gravis.
Multifocal Motor Neuropathy.
The Parsonage–Turner syndrome.
Spinobulbar Muscular Atrophy, or Kennedy's Disease.
Demyelinating Syndrome
Asymmetrical Spinal Muscular Atrophy.
Cervical Polyradiculopathy.
Facial-onset Motor Neuropathy.
Hereditary Spastic Paraparesis.
Primary Progressive Multiple Sclerosis.
Metabolic Myelopathies.
Corticobasal Degeneration.
Cervical Myeloradiculopathy.
Multiple Sclerosis.
Carpel Tunnel Syndrome.

ALS is a rare disease.... a small percentage of all neurological diagnoses.
Many Neurologists have gone most of their career without determining
an ALS diagnosis. Duke Medical Durham NC alone has over 15 Neurologists
on staff and several more neurological related doctors.
 
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