To want a diagnosis via Mumsnet Please

[Anxiouspatient]

Preface, I’m currently in hospital so I’m not actually getting a diagnosis via Mumsnet but I’d like some ideas to suggest to the doctors as they don’t seem to be sure on what the issue is.
I have had two surgeries in the face quite recently and have been suffering some complications of the surgery ever since. This is the primary reason I’m in hospital
A side issue that I’ve been experiencing since my second surgery is dizziness and loss of sensation down one side. I’ve had tests to rule out stroke and they all came back fine. It’s a really weird feeling that I can’t seem to get rid of. It’s not full on vertigo but more the feeling of being on a boat the whole time and it’s even worse when I lie down. The loss of sensation is mostly in one leg, like I don’t have as much control in that leg as the other one but my nerurological assessments have been fine. I’m wondering if this could just be a case of my body reacting to a whole lot of trauma recently or anxiety. Any suggestions would be welcomed 🙂

I know many posters will disagree with this, but I am a big proponent of Dr. Google. I Googled to find out what my illness was when the doctors said there was nothing wrong. I presented my suspected diagnosis, to the professor I was under (which included neurological symptoms) and was told 'No it's not that'. I insisted I get checked for it, and it was right!

Google is only an 'online library', after all. As long as you are sensible and avoid the wackier sites, you will probably be able to get an idea of what is causing the symptoms and then ask the doctor, "Could it be?" I never now take any doctor's word and always Google to confirm or deny their diagnosis or non-diagnosis. I did the same with the kids when they were little. It also helps not to be afraid of medics and to challenge them when we need to.

@twistingmymelons thank you. I totally agree, it’s good to arm yourself with as much good quality information as possible. I haven’t been able to find anything that quite matches these symptoms but I’ll keep reading.

I always use this when I’m curious:

symptoms.webmd.com

Guillain-Barré syndrome? sounds very similar symptoms two people I know who had that.

I really hope it isn’t that? Maybe I shouldn’t have asked!

Thank you, I haven’t seen this before.

@Anxiouspatient If it is GBS. it might be mild. Both people I know who had it recovered much more quickly than Dr Google suggests. I hope it isn’t too, but it needs ruling out if they have not already checked. It is rare.

I totally agree, it’s good to arm yourself with as much good quality information as possible.

And you think asking a bunch of strangers, many of whom are known to be deliberately goady and nasty, is the way to do this? Even those that are trying to help can unintentionally make things worse.

I really hope it isn’t that? Maybe I shouldn’t have asked!

Proving my point.

Yes desperate times!

Definitely not GBS, doesn't fit at all. The dizzyness could be an inner ear problem. If the sensory symptoms are face/arm/leg all on the same side they are probably due to stress/anxiety

Without knowing what the 2 surgeries were you had, or what they were needed for, its really a guessing game.

I recently had an episode of vertigo, room spinning to the point I was sick. GP thought it was a vestibular migraine. I didn't have the 1 sided weakness though, but it might be a form of migraine?

A relative had similar to you. He legs would go weak when shopping and she collapsed a few times, he feet felt like heavy ice blocks and the sensation didn't feel the same. She had nerve conduction tests which were normal and a barrage of tests. The only thing the came up, was her Guillain-Barre test was equivocal.

Monkey pox.

I was diagnosed with functional neurological syndrome after having pins and needles and numbness on one side. It basically means you have neurological symptoms but they can't find a cause for it. I had MRi of thr head and spine which were all normal and neur9logical exam was normal. And EMG nerve conduction tests were normal too.

5 years later and I still have the symptoms. I think they are related to stress and anxiety.

My body has reached badly to surgery before. I got internal tremours and felt like I was shaking all over but it wasn't visible. The doctors thought it was either a stress response from surgery or a massive adrenaline dump from the painkillers they gave me.

Thank you. This does sound as though I could be experiencing something similar. I may have to undergo another surgery which wouldn’t be good news!

Considering most NHS staff these days only blindly apply a set of guidelines reading from a checklist, doctor google is a step up. Few of them actually use their brains to build up clinical experience.
Sad but true.

A reaction to the anaesthetic?
A nerve trapped during surgery?
Scar tissue caused by the surgery?
It depends what your operations were for.

Just thought I’d update this thread for anyone reading this in future. The dizziness was due to a blood clot stuck to my ear drum. I had various responses from doctors about this, some thought this wouldn’t cause any dizziness but after having it removed, it has resolved. The other symptoms I’m still unsure about.

That is good news