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Neurological 'attacks' / nervous system dysfunction???

14 replies

RealLifeClanger · 05/07/2025 12:51

I would really appreciate some help here. I have a GP appointment next week but I don't hold out much hope of getting anywhere. This happened to me following an absolutely hellish period, awful cramps, pain, lower back spasms etc. I'm keeping a symptom diary for my gynae to determine if I may have endometriosis. This was Thursdays and Fridays entries.

Thursday 2nd - woke up with sharp nerve pain in left ankle area. Stabbing pain. Over the course of the morning, the whole foot became sensitive to touch, sunburn like feeling. Suddenly got worse around evening time, progressssed to tingling, pins and needles all down left leg & bottom area. Sudden need to empty bowels. Muscle twitches & tremors. Lower back and pelvic area became very weak and I felt like I couldn't support myself properly. Walking difficult, lack of coordination like muscles couldn't work properly. Very off balance and felt weak throughtout body but legs most affected. Strange fluttering sensation in chest and neck, some palpitations. Exhaustion.

Friday 3rd - slightly better than yesterday. Still weak and exhausted. Less pain. Still tingling and pins and needles. Still some tremors and twitches but less. Loose feeling joints. Couple of sudden bm's. Need to rest a lot. Avoiding putting pressure on spine as worried it's compressed disc related but feels like it's affecting whole body so??? Strange feeling in chest/neck still there occasionally. Palpitations upon deep breaths. Feels like nervous system dysfunction.

Today I'm slightly better again, despite being kept awake by a dodgy stomach for half the night. Some tremors. Still some weird buzzing/tingling sensations in left arm and leg. If anyone has any idea what on earth is going on here I would really appreciate it. It's not the first time something like this has happened.

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Sonolanona · 06/07/2025 01:41

I'm no expert but it sounds like you need a GP referral to neurology.
I have had a very similar experience ...mine came out of the blue years ago and I had an MRI to rule out MS. All was ok-ish for a few years and then I started with severe myoconic jerks and weird sensations . I'm actually going back to neuro this week for a review.
It may be a functional neurological issue related to your gynae issues...our bodies do weird stuff at times, but I would definitely see a GP.

RealLifeClanger · 06/07/2025 07:46

Thank you. I have had a spine MRI (waiting on results) but not a head one. Not sure if I can cope with another 6 month wait for a scan so I may go private. Going to discuss this with my GP on Thursday and will definitely ask for a neurology referral.

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Sonolanona · 06/07/2025 11:24

Good luck!
I was (I feel) fobbed off with 'Functional Neurological Disorder) back when it started. I was quite surprised that when I went back to the GP 3 months ago she immediately re re-referred me, and I have an appointment so soon as Neuro can have a long wait. I'm not expecting miracles but need SOMETHING to stop the jerks!

RealLifeClanger · 06/07/2025 11:59

Good luck with the neuro appointment! I have jerks too. Mostly in my legs. It feels like a pin jab usually around my hip/groin area and then my leg involuntarily jerks. Very weird. I have loads of other weird sensations from head to toe tbh, yesterday part of my scalp felt like it was vibrating 😳

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Blinky21 · 06/07/2025 22:30

Your symptoms are so similar to my own, I get sciatica type pain, shooting ankle pain, twitches, tingling, dizziness, palpitations, perceived leg weakness, all that come and goes. I am too being investigated for endometriosis and I suspect there is a hormonal link to the flares

BrentfordForever · 06/07/2025 22:37

@RealLifeClanger at a minimum can you get your GP to order blood tests ? B6 and magnesium in particular act neurologically

if that was me I’d get b6 (p5p activated form)

x

RealLifeClanger · 08/07/2025 09:13

@Blinky21 its rubbish isn't it. I now have what I think is a migraine bothering me as well. I have the gp on Thursday this week so hopefully will get somewhere but I don't want to get my hopes up.

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BlackCoffeeAndSugar · 08/07/2025 09:16

Get your hormones tested

RealLifeClanger · 08/07/2025 10:04

@BlackCoffeeAndSugar I've read that there's no point in hormone testing prior to menopause as our hormones fluctuate so much that they're not an accurate indicator of anything. However, I have recently been diagnosed with lichen sclerosus, which is common in perimenopause so it may be worth a go, even though my gynae said probably not perimenopause as I'm 'only 40'.

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BlackCoffeeAndSugar · 08/07/2025 10:15

RealLifeClanger · 08/07/2025 10:04

@BlackCoffeeAndSugar I've read that there's no point in hormone testing prior to menopause as our hormones fluctuate so much that they're not an accurate indicator of anything. However, I have recently been diagnosed with lichen sclerosus, which is common in perimenopause so it may be worth a go, even though my gynae said probably not perimenopause as I'm 'only 40'.

Edited

I was diagnosed with premature ovarian failure at 33. My 1st and main symptom was neurological issues.

RealLifeClanger · 08/07/2025 12:46

@BlackCoffeeAndSugar wow, ok. I'll mention it to the gp on Thursday. Thanks.

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Climbinghigher · 08/07/2025 12:51

Maybe get vitamin D checked when they do blood tests. My son had very very odd symptoms and turned out to be stonkingly low vitamin D (related to a medication he takes). Improved very quickly with mega doses. They didn’t check his vitamin D levels last time he had a check so I think he was low for years.

Sonolanona · 10/07/2025 23:18

Well I went to my neuro appointment today.
To be fair they are being thorough... had bloods to check B6 and other possible deficiencies, but after the basic neuro testing doc said (which I actually knew) that my left leg is weaker than my right, so I'm to have an MRI , nerve conduction tests, and thankfully clonozapam to try and control the myoclonus. She suspects it's spinal nerve compression (which given I have chronic back pain wouldn't be a surprise)
However... she thought I was a 'new' patient... it appears that my record (previous MRI, testing for MS etc) has vanished! From one perspective that means it's a totally fresh eye on the problems, on the other it means not connecting the dots to my previous bouts of ataxia etc... we'll see!

RealLifeClanger · 11/07/2025 09:22

@Sonolanona glad they are being thorough. I had the results of my spinal MRI yesterday and she said all was fine. She said she couldn't request an MRI of my head as she was 'just a spinal consultant' but given my symptoms they have referred me to neurology. I will have to pester the gp in the meantime to get bloods checked etc. Saw the gp before that as well who said to wait and see what the spinal team said so that was also a fairly inconclusive appointment. I'm booked in again in a few weeks. People keep suggesting fibromyalgia but I'm not convinced.

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