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When did your neurological symptoms start?

Discussion in 'Neurological/Neuro-sensory' started by Lalab, Dec 4, 2015.

  1. Lalab

    Lalab

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    Hey folks,

    So it’s common knowledge that most folks with cfs develop some sort of neurological (and or cognitive) symptoms. Some develop them later in the course of their illness (a few months or years) and for others they develop them almost simultaneously with their fatigue.

    With this in place, I thought it would be interesting to know when into the course of your illness (in days, months or years) did your neurological symptoms develop?

    They could be anything: headaches without the pain, vibrations on the skull, weird physical pressures, blocking feelings, cotton, decline in executive function, pins and needles, a weakened short-term memory, etc.

    Cheers!
     
    merylg likes this.
  2. Antares in NYC

    Antares in NYC Senior Member

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    For me it was within a month of the original onset, but the neuro-cognitive issues have been getting progressively worse over time.

    These neuro-cognitive issues have been relentless (brainfog, memory problems, lethargy, confusion, sleep cycle disturbances), but there was one time when they disappeared completely. I explained that mysterious occurrence in this blog post, with some potential ideas as to what may have caused that sudden, albeit temporary remission.
     
    Last edited: Dec 4, 2015
  3. Lalab

    Lalab

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    Hello antares, thanks for your reply. I looked at your blog post and found the results very very interesting, especially in light of the rituximab trial. Please see my reply on your post.
     
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  4. BurnA

    BurnA Senior Member

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    My neurological symptoms started about a month or two after my initial sudden onset of post viral fatigue. It's hard to know exactly because it's not something you pay attention to until it gets to an obvious level.
    For example I noticed I was getting light headed when I stood up but I didn't know anything about POTS at the time so I didn't pay too much attention to it. Only later when I read about POTS and did an at home test with my hrm did I know I had it.
     
  5. Invisible Woman

    Invisible Woman Senior Member

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    Neuro symptoms and pain were the first problems to start making life really difficult and were the symptoms I originally went to my doctor about. They remain, for me, the most disabling symptoms - especially neuro. & cognitive problems.
     
  6. ohallboyz

    ohallboyz

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    Mine started almost immediately at the onset of the virus, which included swollen glands and a general feeling of being not well. The first neuro symptom was sound sensitivity.
     
  7. trails

    trails Senior Member

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    For me, progressively worse PEM and neck/upper back pain for about 10 years. Other symptoms that existed during that same time frame included chronic constipation, acid reflux, and cluster headaches. For the last 2-3 years of those ten years, stamina, energy, cold-tolerance, and my ability to remain asleep at night progressively declined. Also lightheadedness and periodic loss of balance increased.

    Then virtually overnight, I was hit with extreme fatigue and cognitive issues (slow thinking, difficulty focusing, inability to concentrate, forgetfulness, a loss of reading comprehension, a haziness in thought processes, and reduction in decision-making abilities). Since then, these two symptoms remain far and away the most debilitating aspects of my present condition.
     
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  8. Old Bones

    Old Bones Senior Member

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    My neurological symptoms started about six weeks after sudden-onset caused by an upper-respiratory infection. What really caught my attention was that they occurred only on my left side. My ME specialist described them as "petit mal seizures", and stated that had I been left-handed, the sensations would have been affecting the right side of my body.

    The most bizarre symptoms included: the sensation of a hot liquid being pumped through my left eye and ear every few seconds, the sensation of a sharp spike being driven into my left shin several times a minute, intense pain from the slightest touch or a breeze blowing through my hair, "echo popping" sounds in my left ear, and flashing lights when I closed my eyes. My sensitivity to sounds, scents, light and movement was acute. These gradually improved until they were barely noticed after about 15 years. My sound sensitivity, in particular, seemed to decrease after going gluten-free.

    Cognitive problems started one year after onset; some have gotten better, others worse. Perhaps it depends on the part of the brain being used. Although, I've read that functional MRI scans show that ME patients use multiple parts of the brain working together to accomplish cognitive tasks. For me, anything involving numbers (math, sorting by date, etc.) are particularly troublesome. In more than 25 years, I've only been able to easily match credit card bills to the statement once. As an accomplished pianist pre-illness, I retain nothing that I practice. In fact, I often state that "practice makes stupid", because the more I try, the worse I get. At my worst, I couldn't remember how to read music, or even having heard particular pieces I had practised every day for weeks. Similarly, attempts to sew involved my doing things inside out, upside down, and backwards, despite having sewn almost all my clothes since age 12. My spatial sense is awful.

    A few years ago, starting treatment for hypothyroidism helped my ability to speak coherently to express my own ideas. But, retention of what I read has not improved. Like many of you, cognitive issues are among the most debilitating -- especially that cognitive effort and concentration are so fatiguing.
     
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  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    Interesting that there is often sound sensitivity. I have this (among so many other neuro problems).

    I also have the possibly more unusual problems alluded to in the first post. Strange temperature/pressure tingling sensations throughout my body but often in my head and neck. I have had what feels like soda pop bubbles fizzing and move like a wave from back to front of my head as an example.

    I have slow onset ME and have had neuro symptoms all my life as I've had epilepsy since infancy so can't state a specific onset due to ME. I would say though that what became prominent when it was clear that I met the CCC/ICC was (besides PEM) the 'coat hanger' pain and tension that feels like a huge tight knot at the base of my skull and goes across my shoulders.
     
    merylg likes this.
  10. SOC

    SOC

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    I have never had the buzzing, vibrations, weird physical pressures, pins and needles, blocking feelings or any of that type of neurological symptoms that I often hear described. However, I have had severe cognitive dysfunction, some sound sensitivity, and autonomic problems. The major cognitive dysfunction hit immediately with the very sudden onset flu-like illness. It was so sudden and obvious that multiple people commented on my cognitive problems within hours of the onset of flu-like symptoms. The autonomic problems seemed to develop over the course of several years.
     

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