Teen- tired, collapsing

Did your health care providers rule out neuropathy? Some of the symptoms you described—a tingling sensation in the toes that spreads up the legs toward the trunk, weakness or heaviness in muscles throughout the body, and problems with balance or coordination—may fit. From what I read some kids, teens, and young adults experience small-fiber neuropathy that can lead to many symptoms. The most common cause seems to be autoimmunity, and there are treatments for autoimmune neuropathies. I hope this may be helpful and wish you the best.

Thanks for the feedback. Currently, no diagnosis from PCP. Still waiting to get an appointment to the neurologist.

Keep a food diary for a few weeks, and maybe try a multi-vitamin, along with non-processed diet, low sugar. Terri Wahls has some good information--I haven't been able to do her entire diet, but she has managed MS for years with it (NOT diagnosing). Diet makes a difference for autoimmune. Make sure he moves all limbs and muscles daily, to keep up his strength--yoga, pilates are safe enough. If he drinks energy drinks, ask him to stop. https://www.ccjm.org/content/83/12/895

I’m not sure what’s going on with my daughter, she seems fine one day then not the next. She collapsed again at school a while ago saying she feels exhausted, it was hard to even hold her instrument to play and that her arms hurt, it was worst than any other time she fell. Yesterday, she was at the doctor, she was tired, trying to keep herself awake, then as she was asked to walk she started walking wobbly like she did back on Oct last year. After a few minutes she’s walking normal again. Her friend mentioned that she says it was like she had a hard time trying to get her eyes to open and trying to keep herself awake. She’s been very tired lately the past 3 weeks.

Also, back in Oct last year when these symptoms started, eventually her PCP ran a Covid test and said she was positive. I wonder if this is all she is experiencing is due to Covid. Have anyone heard if Covid has impacted teens?

@pmyok
Covid definitely can affect young people. They don’t often have a severe acute illness but can have so called long covid Your daughter definitely needs the neurological evaluation.
My son was in middle school or high school when I got a call from the school nurse that he collapsed in school. When I got there he was alert but extremely weak and exhausted. His reflexes were weak too.
He went through a neuro eval, including a sleep study. One of the early diagnoses was narcolepsy. The final diagnosis was fibromyalgia- I don’t know if that’s all it was. Fibromyalgia is also a sleep disorder. He eventually improved when treated for Fibromyalgia.
Your daughter’s symptoms are unusual- I hope you get an answer soon.

Thank you for the info. I will suggest that to the doc. We were able to see the neurologist a couple days ago and was told to increase food and fluid and test for mono. PCP did blood work again, everything was normal - no history of mono. My daughter is still very exhausted and tired everyday and looses balance. She’s been complaining of body aches too. The other night she said she woke up at 2:54 AM, felt like she was falling/tumbling except she was in bed, she tried to open her eyes but couldn’t, she was trying to get up but she couldn’t, she was aware of whats happening, her breathing breathing was heavier, she was physically and mentally exhausted at 3:04 AM. Not sure if this is anything seizure related. It’s the first time this occurred late at night.

@pmyok
Did the neurologist recommend any other testing?
It almost sounds like vertigo she experienced in bed that night. You also mentioned that she has balance problem. What does her PCP think?

The neurologist says she needs rest and fluids, test for mono because that may be the cause for fatigue (results=no mono), suggested physical therapy and to revisit in 3 months. PCP is out of ideas as all bloodwork all have been normal, mri - no lesions.

Last I mentioned to PCP, says it’s not vertigo as her symptoms does not fit.

My daughter last episode was May 4th, she was doing fairly well until yesterday May 17th. She went to school and was tired and exhausted and weak, left foot was numb and lower back hurt (11:20 - noon or so). Then later that day she was sitting in rehearsal, her friend notice her swaying, looks tired and checked on her. Daughter says she was tired, exhausted, small headache, lower back ache, loss train of thought, can’t focus to play music, right foot asleep, took a bit after that happened to get up and walk.

She had an EEG done Tuesday so we are still waiting for results.

@pmyok
Any results yet from the EEG?
How is your daughter doing?