Support or advise needed

[ericola]

Hey

Bit of a long one, I’m sorry

So this started back in March 2024 when I became paralysed down my left side, droopy face, slurring speech, dizzy, couldn’t speak but could hear most of everything (there are parts I have no recollection of) and was taken to the hospital with a suspected stroke or brain bleed…..jump to a few hours later and I’m back to normal. 2 weeks later the same thing happened again only I was at work (I work in a hospital) but this time I needed help breathing. Again taken to resus and an hour later I’m back to normal. All bloods, CT imaging were normal and consultants held their hands up and said we dont have a clue what it is but definitely not heart but will keep you in overnight. Neurology came to see me ‘as a gesture as your staff’ and stayed with me for no more than 4 mins and asked a few questions and ruled definitely not neurology related. Doctors were perplexed and said to just come back if it happened again. Paid for a private doctor and he was adamant it was just vaso vagals (feints) and that I didn’t need help breathing last time (the breathing tube down my throat suggests different and when I said this to the ICU nurse who put it down my throat she was fuming) anyhoo I digress…….these episodes seem to follow the same pattern so now I can tell when they are starting and so long as I don’t leave it too late so I become paralysed I lay down and I can work through it. If I become paralysed then I literally can’t move or speak, I can hear everything but I can’t acknowledge anyone. My other symptoms include:

Exhaustion not normal tiredness and can’t function, never been like this and it’s getting worse

Heaviness especially in left side (arm…with had feeling hot inside?)

Paralysis can hear what’s being said but can not respond

Slurring words

Dizziness (vertigo)

Eye pain (right eye)

Thick head/pressure headache?

Fuzzy/tunnel vision

Dropping things (have them in my hand or go to grab and I drop them)

Shooting pains/spasms in my legs and arms

Forgetting words or thinking the right words but saying something completely different

Memory issues (age related?)

Balance is a little off (mainly to the left and sometimes my leg just gives way)

Freezing feet

Numb left arm and hand

Sudden intense itching on shins

Struggle in heat and worsens fatigue etc

I had an MRI in December this is what the report showed.

On T2-weighted and FLAIR images there are focal hyperintensities in the white matter of both cerebral hemispheres, more numerous in the parietal and temporal lobes, some of them periventricular, other subcortical and juxtacortical

i had a head and spine MRI with contrast today and I have an appointment next week with neurology.

My concern is I’m feeling well these past 10 days and sometimes I feel well for months and so I end up thinking I have imagined it all. My husband thinks it’s age/perimenopause/weight related (he’s not saying it’s not anything else but more likely to be) so I have been trying to address the weight (I’m not overweight but I’m heavy for me)

Does anyone have anything happen to them that is similar or can give any words of advise?

[James4]

Hello, it sounds like you are having a very tough time. I think a number of the symptoms you mention many people would recognise. For example being paralysed down your left side (I became a very good one handed Tetris player) plus a number of the other items you list. I am sure there are a number of issues that could cause those kind of problems. I am sure it must be very scary for you, seeing neurology is key as there maybe other things going on and maybe nothing to do with MS. I think even people who have very clear signs of MS on MRI scans diagnosis can take quite a while. You sound like you are doing all the right things and making sure people keep looking. I hope that they can pin point what is going on and maybe build a plan. I think you are doing all the right things asking the question of the doctors - what’s going on. Good luck

[Hank_Dogs]

Hi @ericola and blimey , that all sounds very unnerving- scary for you. . When you see Neurolgy (Neurologist?) see if you can take some with you and also a pen and paper. Those meeting can pass by in a blur and you can come out kicking yourself for not asking some questions and for not remembering what was said.

I’ve had MS for over 19 years now and although some of your symptoms sound sort of similar to mine I’ve never ever had what must be a scary sudden collapse, breathing difficulties etc. and my symptoms are with me all the time ( bladder urgency and slowly in increasing difficulty in moving my right leg, crushing fatigue if I get to hot)

just wondering if you have noticed any possible things that could be triggering your episodes ?

I very much hope that you soon get some answers from the medics