She's Lost Control Again. Neurological problems, anyone any experience?

[AHeadCase]

This is the start of a post I made on the Geek page about some equipment.

Brief backstory: I'm mid 40s, well educated (paid my way for all of it).

Suddenly I am showing signs that I have a brain condition. Short term memory loss, can't remember words, falling over a lot, having to take the stairs sitting down, uncontrollable shakes, walking into things, bruised all over, can't drive, been advised not to leave the house alone etc, etc.

It hasn't been 2 months yet, I have seen neurologists, more appointments coming up. It is very frightening. I'm crying a lot, I've already spent stays in hospital. Think I'm going to lose my job soon.

Christmas is great, I wouldn't begrudge anyone the break. Unfortunately it has put the brakes on medical appointments.

From the recommendation she made the initial neurologist suggested that I see a colleague, that colleague specialises in MS, Epilepsy, MND, Alzheimer's and that type of thing.

I want to be clear that I am firmly in the camp that everyone should make their own choices and do what is right for them.

For myself, having watched my physically healthy Grandfather deteriorate through Alzheimer's for 18 years, I am firmly decided that I do not want to live with a brain deteriorating disease for 20 years or more.

Anyone with experiences of their own, would appreciate hearing them.

Thank you

Have you had an MRI?

That is really tough. Do you have family around to support you?

I presume autoimmune has been ruled out? I had all these symptoms (and more) and have
A very rare type of vasculitis. Have you had mri and ct?

@AheadCase - From the recommendation she made the initial neurologist suggested that I see a colleague, that colleague specialises in MS, Epilepsy, MND, Alzheimer's and that type of thing.

Sorry to hear you're having these problems.

A neurologist won't specialise in all those conditions, they are all very different to each other.

If it's any encouragement - this doesn't sound like MND (that doesn't generally affect memory).

Try not to panic. I have one of the conditions you mention and I live a great life. It’s easily picked up on an MRI.

Did you have a full head MRI scan?

Hello, thank you for replying.

This is all very new and given that the NHS is so busy... I stayed in for a week in November it's that recent. Locally, the hospital is swamped with managing Covid cases.

When I call my GP there is a recorded message saying that everyone is busy with the Covid boosters and rightly so they will only speak to you if it's an emergency. And I think 'well if it's an emergency, DH will call an ambulance'. I'm already confused and the intricacies of trying to work out whether or not I think I'm urgent fries my brain.

In hospital they gave me a CT scan and treated me for a brain bleed with loads of antibiotics. Took a lumbar puncture which found nothing.

They said that I needed an MRI but I was walking and talking, which qualified me to be shipped out of hospital in favour of people more ill than me.

We have private medical insurance through our work. I have already booked an appointment with a neurologist who does claim to be a specialist in all of those things I have listed.

Unfortunately, even that neurologist can't see me for a month. Which is why losing my job is so concerning, my private medical insurance comes with my job. I am on DH's and he is on mine, but it adds an extra layer of complication.

Today I woke up and my face and head is black and blue again. We have shop chores to do today. DH looked at me and left the house without trying to shift me!

My life has become very small, I have few answers and none that will be happening quickly. I'm frightened.

Have you heard of FND?

FND?

Ok, I briefly Googled FND and that sounds like it could be, there again so do a few things.

Reading back blueshoes oh good grief. We are currently watching Succession, I find it difficult to watch because (and DH came to this realisation at the same time as I did) my family are like the Asda version of the Roys.

Which is not to say that they shop in Asda, you wouldn't see any of them at a supermarket that is considered less than Waitrose . There is nothing wrong with Asda btw.

But there is a fair family wealth, which they are constantly bickering about, trying to outplay or undermine each other. It's awful.

Unfortunately, money is a potent force. Some years ago I went NC with them. It's just me & DH.

My DCs are in touch with us and my parents too . DCs were funded through Uni by family (we would have paid) one now works in the family business, I have to tread carefully with them.

It's a bit unclear from your posts what has actually triggered your concerns.

Did you have a fall where you hit your head? And is that why you had a CT scan?

bobbie42 in late October/early November I started to become dizzy, fell over, probably blacking out, walking into things and forgetting what I did yesterday, my long term memory is ok, blinding headaches all day every day, couldn't see well and sometimes not at all. Shaking so that I am unable to hold my phone sometimes and wobbly legs. Slurred words, occasionally a complete inability to form words. I am very photosensitive.

Good grief, I have memory loss so I can't remember my own symptoms

However, I didn't have all of those symptoms all of the time and I still don't. I have the headaches every day. They aren't migraines, I get migraines, sometimes I get both types of headaches simultaneously.

When it's very bad the first thing that happens is a dark green cloud covers all of my vision. When that happens the accompanying symptoms mean that I am completely insensible. The good news is that I don't have memory of those bad spells.

In mid November I was admitted to hospital as I woke up black and blue. My face looked like I had done a few rounds in the boxing ring. I couldn't form a sentence and my short term memory was gone. DH called our GP & sent them a photo of me. They called me an ambulance immediately.

The paramedics assumed that DH had beaten me up.

My hospital stay was a week, the CT scan did find irregular fluid (their words) and pumped me full of antibiotics 24 hours a day, all week.

As I said in a PP they sent me home when they couldn't find an answer because I was walking with a Zimmer frame (in hospital only) and I could speak in a fashion.

I have experienced about 3 previous blackouts in my life and there was (and remains) a question mark around epilepsy to this day. My most recent blackout was 4 years ago.

I have already seen a neurologist who could tell that I couldn't see properly, the back of my eye is healthy. I have an eye test appointment soon.

It's been sudden, it is scary and it seems as though it is here to stay for a while at least.

Does that answer?

Undiagnosed coeliac ?
www.coeliac.org.uk/information-and-support/coeliac-disease/conditions-linked-to-coeliac-disease/neurological-conditions/

Migraines?

As in chronic migraine

There was a programme on last year called the Diagnosis Detectives, I think it was Michael Mosley that presented it. They had a subject with similar symptoms and the eventual diagnosis was FND. Not sure if it's available anywhere, but would be worth seeking out for the diagnosis path and the specialists involved.

Yes, my post says that I have migraines. This headache is not that, sometimes I get a migraine with this headache too.

TheCanyon suggested FND. It's on my list of possibles to ask the neurologist about.

Try not to worry OP, I have MS, I don’t think your symptoms sound typical for MS at all. Try to stay away from Google, as you will just stress yourself out. Good luck with getting a diagnosis & treatment I hope you feel better soon.

In hospital they gave me a CT scan and treated me for a brain bleed with loads of antibiotics

This sounds like an unlikely treatment for a brain bleed.

Try not to worry for now (I know it’s easy to say and hard to do) and definitely ask about FND (if you want to read more about that www.neuro symptoms.org is very helpful).

www.neurosymptoms.org/en_GB/

Thank you @Roselilly36, in the nicest possible way your kindness has made me cry. I've been doing all the crying as of late. I feel isolated and scared. If nothing else, that is your good deed of the day. Stay safe and well. Once again, thank you 

No, @Egghead68. That's exactly what someone else I know said (she has a degree in law, so obviously she knows everything, she has never worked). It made me feel as though I had to justify myself, that I was lying. She asked for news and I was only repeating the Drs updates.

During my hospital stay I was drugged to all heaven and I don't remember everything.

However, I do remember that they were treating me with 2 different IV antibiotics all of the time. The Dr said it was for the brain bleed. The CT scan did show 4 blobs of something, DH and I saw them. In my discharge summary they are described as irregular fluid. I had a concussion. That is on my hospital notes too. That may be an explanation for the fluid?

I'm not medically qualified in the least, I can only tell you how it is and what has happened.

Thank you for that link @Egghead68. I'll take a look.

AHeadCase sorry to hear about your dysfunctional family. It does not sound like you can rely on them. So glad you have your dh around. I hope you find the cause soon. This is baffling.