Need a Mumsnet diagnostic team - possible neurological issue

[Covidcovid]

Ok so Mumsnet previously correctly diagnosed 19yo dd with coeliac disease, EDS and POTS. She also has fibromyalgia by the way.

I’m now thinking something else is wrong and that she’s getting fobbed off again.

She’s had some weird episodes a few times in the last year or two. Had another episode yesterday. So she woke up not feeling 100% but not too bad. She’s not anxious or stressed about anything at the minute. Uni work is going well, she seems chilled out.

Then about 5pm she felt very unwell very suddenly. Lost feeling/sensation in her legs and arms. She could still walk but very unbalanced. Slurring her words like she was drunk. Visual disturbances, with her vision getting brighter, flashing lights and then struggling to see. Could barely string a sentence together but was being quite verbally aggressive. After 10 mins started easing off. When she’s had these episodes before she’s “wiped out” mentally and physically for a few days.

She rang 111 and they said go to a&e. They were worried in a&e and think it might be a neurological issue. Bloods were fine, inc vit b12. Obs were fine.

We’re going to go back to the gp today and ask for a referral which is what a&e told us to do. I know the waiting lists will be awful so think we’ll have to pay privately to see someone.

Is there anything from these symptoms which makes anyone think we ought to ask for a certain thing to be considered or test to be done? I’m just worried because without Mumsnet suspecting EDS and me telling the doctor that’s what I thought she had she’d never have been diagnosed with that.

Oh the other thing, she thinks she’s cognitively deteriorating, like some form of dementia. Struggling with thought process, memory, etc. I’d agree that there seems to be a noticeable decline.

Could it have been a migraine with aura? I had a couple when I was pregnant and it gave me stroke like symptoms; confusion, inability to say what I wanted to say (words came out jumbled), loss of sensation in left side and tunnel vision. I think it's called a hemiplegic migraine. Hope your Dd gets sorted out soon x

How frightening. I think she would need a brain scan and trace (did she have one before) (to exclude tumour etc) and to consider epilepsy. I am completely unqualified though but I think this is what the medics on my team would have recommended. It's not always a physical cause but that all needs looking at as there's so much going on with her

I really hope it’s something that simple. Do they just get diagnosed on symptoms?

She’s never had any form of brain scan or trace.

I'm thinking some kind of seizure?

My dad had epilepsy.

It certainly could be a type of migraine (my migraine symptoms are similar, can't speak or feel my fingers, visual disturbances etc.) but it could also be something worse. Definitely needs investigating to rule out the more serious options.

If it helps I am seeing a neurologist privately (covered by work health care so I'm lucky). Initial consult was about 250 and I've had eeg and mri and now another eeg (that's the trace test) and i think it's around £1k in total. Depending on test results then heading back into the nhs. Taken me about 2 months to get here but that's including Christmas and also Covid delays on my mri as the private hospital is covering some nhs overspill.

Do get her seen and push - I was fobbed of with panic attacks by 3 different drs initially although your daughters attacks are more pronounced than mine.

I did wonder about migraines from your description but also epilepsy which needs to have underlying causes checked when it's newly onset. I was asked about family history of epilepsy in my appointment.

Sounds like a migraine to me. You don't always get head pain (or other meds could have masked the pain)

@funtimefrank thanks for the idea of costs, that's really useful.

It is sounding like it could be migraines.

I'd agree migraine (lights can be aura) or possibly seizure (feeling wiped out after but could also apply for migraine)

Both these are a clinical diagnosis and tests are not very helpful. You cannot 'see' either on an MRI or CT. Even an EEG can classically be normal if the person is not having a seizure at the time.

Suggest asking GP for a neuro referral but no idea what the wait would be in current times.

Keep a diary of when it happens
Maybe consider taking a video

They'd probably want to do either a CT or MRI as a rule out though

What about a TIA - transient ischemic attack also known as a mini stroke.

My dad would become aggressive during a stroke.

She needs scans...

I hope she feels better and gets some answers

@Covidcovid I have these - google hemiplegic migraines, absolutely the same as my symptoms, my vision goes, then I lose use in arms and legs, they go heavy, I can't talk properly, lasts about 20 mins and then gradually comes back and I feel like I've been hit by a bus - I have to use an injectable medication on the first notice of my vision twinging and that stops the rest of the symptoms and I just have a god awful headache after

Sound exactly like my migraines, apart from being verbally aggressive, which makes me think perhaps it is some kind of seizure. I would suggest it's unusual to have a migraine without a headache though - that's the main symptom.

Definitely get this investigated.

I wondered about migraine as well. I get hemiplegic migraines & it does sound similar. I'm not sure how much cognitive decline there would be after just one attack though, do you mean she feels confused & slow, like she can't mentally reach conclusions, words etc that she would normally be able to? And is it getting better as time goes on? Or is it continuing to deteriorate? I slowly get better after an attack, but during it & sometimes for a few hours or even days after, it feels like I'm going senile!

I was diagnosed by symptoms, they had to rule out stroke & brain tumour, & other illnesses by taking bloods etc. It was a worrying few months. Fairly conclusive diagnosis was when I responded positively to the medication.

My DD had a rare neuro disease called Moyamoya and these episodes sound like TIAs (mini strokes) she has experienced. Also the cognitive decline. Being rare, it’s unlikely that your daughter has this but with what’s happening I think it’s definitely worth pursuing tests. My DD was firstly diagnosed with hemiplegic migraine and was referred for MRI and MRA scans ‘just incase’. I’m sure there’s lots of things this could be (I really don’t want to scare you) but she should be checked I think.

She says she feels like she’s continuing to deteriorate cognitively. That over the last two years she’s feeling increasingly mentally slow, struggling to process stuff, struggling to remember stuff.

Hmm, I'm sorry to hear your daughter is not feeling well. I'd want doctors to also consider multiple sclerosis (hopefully to rule it out ASAP) but it might fit the pattern you're describing of muscle weakness, visual disturbance and can be mistaken for fibromyalgia.

Functional neurological disorder? Can manifest itself in lots of different ways. Look up neurosymptoms.org. Keep pushing for investigation. Good luck

Has she had an eye test recently? I only ask because the optician detected excess spinal fluid around my brain and I was fast tracked for a ct scan and lumbar puncture. Eye tests are so cheap yet they can often bring answers.

By the way, that condition is known as idiopathic intracranial hypertension and it's sometimes connected to fibromyalgia. I have both.

Yes, I’ve been a bit worried about MS.

That neuro symptoms website is really interesting thanks, she’s been looking at it and reckons she has the majority of the symptoms.

Yes, had an eye test in the summer.

She rang the GP today but they’d run out of appts. So try again tomorrow.

Autoimmune thyroid disease? Often goes hand in hand with coeliac disease. And migraine as well perhaps... When you say she has been deteriorating over the last two years - increasingly mentally slow, struggling to process, remember stuff - they are definitely symptoms of thyroid issues.