Tell us about your symptom and treatment experience. Take our survey here.

caret icon Back to all discussions

Unusual Lhermitte's?

Hi,
I’m currently on the very long UK waiting list for neurology. I’ve been on it for a little over a year now.
A little background, I’ve had bad fatigue (I hate this word I prefer crushing exhaustion.) since 2011, but only got diagnosed with chronic fatigue in 2019. After I struggled to hold down a job because I was so tired.
I have a whole list of other symptoms that I’ll put below. But recently thinking back I had what I think might be Lhermitte's for 3 years.
It started whilst I was playing tennis at school at 16 right before my final exams. I turned my head to the right and it felt like I had been struck by lighting, from the center point of my neck this shock went up into my head and all the way down my spine into my left leg. It was so sharp and quick I just collapsed.
After being taken to the A&E they said that I was just stressed and that it was nothing to worry about.
But it continued on and off for the next 3 years quite frequently. At first it was just as shocking and I would collapse every time, and then slowly over time I would do it and be like urgh not again that felt horrible, and then eventually it got better and now I might have it once in a while. Around the same time I got a boyfriend and I vividly remember sitting on his kitchen counter as we ran ice over my feet and legs because they felt like they were on fire. This has happened on and off as well over the years.

I have to add that I had childhood epilepsy and a mum who made too much of a fuss of me which made me uncomfortable as I didn’t enjoy being made out to be a spectacle. So I’m really bad at asking for help and hide symptoms a lot. But now that I’m older and trying to figure out why I feel so rubbish I realised it maybe connected.

So I guess my question is, is can you have Lhermitte's by turning your head instead of looking down?

  1. - Nausea
    - Fatigue
    - diarrhoea
    - Hot flushes
    - Irregular or missed periods
    - Dry eyes
    - Dry skin
    - No sex drive
    - Irritability
    - Anger
    - Mood swings
    - Difficulty concentrating
    - Brain fog
    - Vaginal dryness
    - Neck and shoulder pain joint pain
    - Urine frequency
    - Anger
    - Anxiety
    - Depression
    - Dizziness
    - Bloating
    - Lack of motivation
    - Headaches
    - Reduced vaginal sensitivity
    - Sinus issues ear pain
    - Tinnitus
    - Un-refreshing sleep
    - Exercise intolerance
    - Delayed muscle fatigue
    - Delayed fatigue
    - Bleeding gums
    - Sense of smell returning
    - Memory issues
    - Grogginess
    - Hair loss
    - Hair thinning
    - Unable to cry
    - Voice feels weak and hoarse
    - Nasal drip
    - Heavy limbs when walking
    - Unable to gain weight
    - Nails that break easily
    - Tingling fingers
    - Numb feet
    - Blurred vision
    - Confused speech
    - Muscle weakness
    - Memory issues
    - Raynards syndrome
    - Tight sore legs
    - Tight calf muscle without working out
    - Can’t run on a treadmill anymore, will feel sick and faint
    - Randomly throws what I am holding
    - Choking on drinks randomly

    1. Hi I am so glad you reached out. You have been through so much. I can't even imagine how difficult it is for you to have to suffer with all of these symptoms. To answer you question, yes you can have Lhermitte's while moving your head forward or to the side. I am attaching this article with further information about this: https://multiplesclerosis.net/living-with-ms/types-pain-symptoms. I really hope you can get into the neurologist sooner than later. You may want to check to see if they have a cancellation list that you can add your name to. Please keep us posted with how you are doing. Jill (Team Member)

      Please read our rules before posting.