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

@AHeadCase It must be very frustrating & frightening to have those symptoms & not be able to get a proper diagnosis and treatment yet.

My dh is currently recovering from a neurological problem (though in his case we know the likely cause) and has not had any follow up care since being discharged from hospital 2 months ago.

I don’t like to complain about the NHS but not being able to see a GP for them to make onward referrals is frustrating.

In your case I would suggest keeping a diary of symptoms (with your DJ’s help) and write up notes of what has happened so far. Did you receive a copy of your discharge letter?
This will help you keep track of what is happening.
I would get your dh to phone the GP receptionist who can check your notes if there are bits you both can’t remember.

@Decorhate yes, I have my discharge notes and we have private medical insurance through work. Even with private medical insurance it's a 6 week wait.

Now, I know that I'm spoilt, that 6 weeks is nothing when compared to the NHS, but usually it's about a fortnight privately. I should also say that our insurance is limited, we can only use so much in a year.

I'm just going to hop onto my soapbox here to say that I desperately wish that governments would invest in the NHS, rather than surreptitiously privatising it.

@blueshoes it is baffling, yet I've woken up with a cracking black eye today. I don't know what caused it but I'm hitting my head and my body all the time. It's horrible.

In my experience there is still an enormous amount unknown about the brain. There has been great progress made since the development of MRI scans & other research but there is a lot more to discover. And if it’s a rare condition, medics (even consultants) may not have come across it before.

We are assuming DH’s current symptoms are due to a recurrence of a problem he has had for the past 25 years. But his discharge notes say the scans don’t show evidence of that. But equally they don’t offer any other reasons or plan to investigate further. So we ourselves have to assume it’s the known medical condition. I am still cross about being told it was not an inherited condition and time has proved me right to believe it is.

Decorhate I agree with you and my neurologist said the same to me a few years ago. Apparently around 30-40% of his caseload never actually receives an accurate diagnosis. I am in that group. My neurological symptoms have significantly deteriorated after both the vaccines and Covid itself and sadly I will think we will see a lot more of this.

If you have an unexplained black eye you need to go back to hospital. They might give you an MRI if you go back. Do you mean the black eye and bruising is from falling down but not knowing that's happening? Ask your DH to video these episodes on his phone to show to the neurologist.

Oh no, I'm sorry @Decorhate, I'm feeling bad myself - but I feel much worse for my family who are living through this with me.

You don't say (or I have missed) how your DH is on a day-to-day basis e.g. can he work? Is he able to be independent? Is he aware how he is when he is ill? You say that you think you know what caused your DH's condition, has a medical professional ever confirmed it, or even given him a diagnosis?

Again, I am so sorry that you are all living through this. I can't speak for you, but for me, this is awful and, as I said upthread, very frightening.

I agree that medicine doesn't know much about the brain.

@irene9 I think that Decorhate answers the question about why I don't go to A&E. I'm not sure where you live? Where we are there is one main hospital. It serves a population of a 45(approx) mile radius. A large percentage of the population are above retirement age. Every winter the flu virus takes them beyond capacity. Since Covid they are on their knees. No admissions unless your life is in the balance.

My black eye? If I can even get into the hospital they will look at the black eye, tell me to ice it, take paracetamol and leave.

Firstly @BigotSpigot I am sorry that you have a neurological condition.

A medical professional treating me said that they have seen an upsurge in neurological conditions in younger people since Covid. I know that I have had Covid twice. Once before there were any vaccines and once between vaccines. All of which is to say that I think that, whether they admit it or not, there are a lot of medical professionals who are seeing a correlation between Covid and neurological symptoms.

irene9 I can ask DH to film me if he sees me falling over or wobbling. It can happen at odd times. DH does not follow me around the house, if he tried it would frustrate me very quickly. He doesn't accompany me to the loo, or bathe me.

Hey OP. Have u thought about filming yourself overnight for a period of time, do that you can identify how you are sustaining these injuries? Eg it might be you are fitting, or maybe falling out of bed or even hitting yourself in your sleep?
Did they look at autoimmune issues etc when you were in hospital at all?
Its all really scary and I’m really sorry to hear about how much you are suffering with no clear answers.

@r1911 this?