Confused

[Valleyman65]

I went in to hospital end of April with suspected stroke,all treatment I was given was for a stroke as I couldn't move my left hand side had , physio helped me walk a little with difficulty and climb 3 stairs, all my scans CT,and MRI showed all normal so consultant was confused why my left side still weak. I got discharged from hospital on 10th May still not know what is wrong with me, I feel like everyone thinks I've been putting it on telling liessome days my left hand side is better than other days and I try to do more physically but I tired quickly so limited what I do which is very depressing, I have no pain with it just a weakness and I have very high blood pressure on 5 different meds for this and just found out I have a leaking heart valve and murmer I'm so confused what's happening to me doc more worried about blood pressure than my weakness of left side.

[sykgirl]

It's so frightening and frustrating not knowing what is happening with your own body. I'm sorry you are going through this.

I'm not a doctor, so all I can do is share my own experiences. Obviously, we are all individuals, so my experiences may not be relevant to you. I have FND, and among a multitude of symptoms, that has been causing me to have global weakness which is worse on my left side for nearly 8 years. I just woke up one morning that way. It took nearly 3 years and 3 neurologists to get a diagnosis.

However, what sounded more similar to your experience is what happened to me nearly 2 years ago. I was quietly watching TV when I suddenly had an incredibly intense head pain, then I temporarily lost awareness of what was going on around me. When I came to, I couldn't feel or move my left side, or see properly. As with you, they thought stroke, then brain bleed, then blood clot on brain, but found nothing. It was ultimately concluded that I had had a "migrainous event". Two years later, I still have a permanent migraine, left side weakness, can't feel the left side of my face including tongue, and they estimate that the vision in my left eye is 70% reduced, though I have more movement than at my worst. Did they consider something similar may have happened to you?

The brain is a weird and wonderful thing, and in my experience, the best doctors are those that realise that, and accept that there is a lot about it we still do not understand. Conversely, incompetent doctors, when faced with something they don't recognise or understand, choose to blame and shame the patient instead. Don't let them make you doubt yourself, it is their failing, not yours.

If you can, try to see Professor Mark Edwards at St George's in Tooting (either by asking for direct referral from your gp or consultant, or I believe he sees some private patients). He is a movement disorder specialist, and lovely, caring doctor.

Whilst I was waiting for a diagnosis, I found it helpful to give my illness a name, so I had something to blame and cuss at, rather than blaming myself. I also found out who my real friends were. I think the best advice I was ever given is listen to your body not the haters. Do what feels right for you.

I hope things improve for you and you get some answers. Take care x

[GentleFlower in reply to sykgirl]

@ skygirl Wow that is a beautiful message. I too suffer from FND and have had crazy FND symptoms. But thanks for sharing 😍🤗😘

[pickleweed]

Valleyman65, in which part of the world do you live? Sorry that you are going through this. I use an Amazon.com Echo Dot to listen to things like news, books, games, weather.

[Valleyman65 in reply to pickleweed]

Hi I'm from Bonnie Scotland.

[GentleFlower]

Hi Valleyman65....So what I found is that FND mimics a lot of different conditions and diseases, I say diseases because one presents with certain symptoms myself for instance I’ve had eg stroke like and multiple sclerosis (MS) symptoms (motor weakness) and then test from the bloods scans return negative and no genetics issues revealed from tests.

I suffered stroke like symptoms whilst in bed relaxing, face flopped to the right, jaw dropped and locked, tongue followed dropping to the right and hands locked, right side out of use, couldn’t dial or hold anything but I managed to call 999 for emergency services. Speech was slurred and they could not hear me on the phone. Yes that bad.

The first thing paramedics suspected was a stroke at 26yrs of age by the way...very unusual but not in this day and age as anything is very possible if a very misunderstood FND is possible lol. They tried to fix my jaw at the time it was locked it was a joke really, a bloody looney tunes..live..

Anyway, they took forever to decide which hospital they will take me because they kept talking, it looks like a stroke but can’t be be a stroke..

Later was discovered it wasn’t a stroke - never got anyone to explain anything and was back home at 4am next morning. Crazy right? No, it’s FND - this is how it works. The brain does what it likes.

So I am very sorry for what you’re going though because I too am suffering daily and I’m now 28. My life has been torn apart I lost everything I had built and I’m trying hard to be optimistic and start again from 1, but I think you might be suffering with FND symptoms.

I hope you have a very helpful GP because for the last 23 months I have fought tooth and nail to have my disabled world set up using my own money (and later the NHS) because no one believes a young healthy looking person like me(bet you’ve heard that one before, most with FND suffer this unreal criticism) with wheelchairs, electric and manual, incontinence pads pads,urine devices, crutches, accessible home, adapted car everything I need for those horrible days which are 90% of the time...

P.S my scans, bloods, ecg video of the brain for non epileptic seizures and CT and MRI, were all negatives...

I think one day the Dr’s will find they made a mistake in not catching the causes of FND - and that really it’s a type of MS - there will be a proper diagnosis and prognosis even a cure one day.. let’s watch this space shall we?🤗

So I wish you all the very best. 😉

[Valleyman65 in reply to GentleFlower]

Wow only 26 geez,I'm so sorry you have this it so horrible,the fact hardly anyone understands or believe my symptoms sometimes I think my GP didn't believe me,I'm not half as bad as you say you are. I really hope you're quality of life gets better soon . Take care.

[GentleFlower in reply to Valleyman65]

My quality of life is up and down sometimes I’m okay others times I’m not and when it hits me it hits me hard. Even when I catch a cold it’s like 20x worse than an ordinary person catching a cold or some sort of infection. It’s crazy but I have learnt to manage it and still learning though because being young I forget to take it easy and over do it.. so yes very hard.

Anyway I wish you all the best too.