Was in town shopping last Tuesday when I came around on the floor surrounded by paramedics.
I had gone in a shop to buy some cards when my eyes started acting odd but thought this will clear in a min and then must have collapsed, although I don’t remember collapsing.
Shop staff told paramedics that they became alerted as when I fell I took a stand down with me and they went to investigate. They also told paramedics that I was having a seizure while out of it.
Lots of prodding and poking in A&E later I was referred to neurology.
Had an appointment last Saturday, quickest I’ve ever had a hospital appointment!
I’m being informed that there are many things this could be. I also didn’t realise Lupus can cause seizures either, which was silly of me as know can affect the brain.
There was a blip in heart test so also being referred to cardiology. Sadly waiting times are ridiculous. Earliest appointment is mid May although neurology is seeing if they can get cardiology to speed this up. Watch this space.
Was sent for a plethora of blood tests yesterday one of which I was told by the nurse was a rare test called ESR test. Something to do with inflammation. Unlike most blood tests has to be done using a glass tube. So slightly odd.
Bit nervous as I’m also being referred for MRI and EEG.
You hear such horror stories re MRI but am hoping to have done sooner rather than later.
I hope they find something to explain the collapse as I don’t want to be left in limbo never knowing. Haven’t been to town since it happened. I know it’s irrational but so afraid of it happening again. Shook me to be honest.
Anyway any input or advise always gratefully received.
Also so fed up of always being awake from 4am. Miss my lovely lay ins from youth 😁
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Hollydebs
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"Was sent for a plethora of blood tests yesterday one of which I was told by the nurse was a rare test called ESR test."
There is absolutely NOTHING rare about the ESR test - it is a simple and routine part of any blood panel in investigating pretty much anything! I doubt anyone on this forum has never hand one done - and Wendy started a long thread discussing it the other day. No need to worry about that - and the nurse needs a bit of education. How to worry a patient - tell her the test is rare when it isn't...
The sample of whole blood it put into a narrow tube which is set up vertically and then they time how long it takes the red blood cells to settle - like sand in water in a bucket sinks to the bottom. There are proteins on the surface of the red cells - which are often produced by the liver in response to inflammation somewhere in the body. These proteins tend to make the cells clumps together more - and big clumps sink faster than single cells. So lots of protein speeds up the speed they settle at. It is a very non-specific test, it will go up with a cold or other infection, all sorts of factors including being pregnant in fact, but it does give an indication of the presence of inflammation somewhere that needs to be found.
It's possible you weren't having a seizure either - members of the public will often say that when it wasn't actually the case. Did the paramedics see anything?
So sorry to hear that happened to you, in public too, poor you. I had a seizure at the beginning of my lupus journey, just right out of nowhere tho fortunately I was at home. My daughter knew immediately what was happening and 999'd it. When I came out of it paramedics were there asking my name, which I did not know, my daughter, who I could not recall her name. I was also soaked to the skin head to foot, drenched like a bucket of water had been poured all over me. Also I had bitten my lip, not my tongue and pulled every joint I had, The next day, because of the "bow backed" type of seizure I had, I literally pulled every muscle in my shoulders, groin and legs and back.
Apparently I stripped the wet clothes off in front of the medics as they were so wet lol. Got an eyeful they did. Because of the wetness it was assumed to be cardiac in origin as that's the one that usually makes you wet like I was. I was very quickly put through neurology and cardiac tests and they were all fine. The seizure is just one of the gifts that lupus will give you when you first encounter it.
I hope it doesn't happen again and that your tests are fine in that respect. Don't worry about the MRI, it really isn't that bad but you can take a valium or something if you like, just ask your gp for a couple just in case; they are usually very good about it.
Wishing you well dear and fingers x'd all well with your tests.
I had a similar experience, I have atrial fibrillation but had no idea I was having long pauses,which caused the collapse, I knew I was having short pauses.
don’t know re heart as yet. On waiting list for heart to be monitored over a few days but no opening until May in Cardiology. Hospital said there was an irregularity on heart exam but no one is giving much in regards to details. Too many departments involved.
Hi Hollydebs, so sorry to read about your seizure. How incredibly traumatic for you. The erythrocytes sedimentation rate (ESR) test is a blood test measuring the level of inflammation in the body, and inflammation is often raised in lupus patients. It is an absolutely routine test for lupus and indeed is used to monitor lupus. So I have it regularly. Batteries of tests for neurological, heart implications etc are standard procedure for lupus patients but they can be bewildering and overwhelming. In many cases they are just ruling things out. With my very best thoughts and regards, Lily.
Oh bless your heart Hollydebs, you poor thing! It’s not irrational at all, I would have felt shaken too! Is there anyone that can go into town with you that may make you feel a bit safer? Then if anything happened you would have someone familiar around ☺️
I honestly didn’t know that Lupus could cause seizures so it’s definitely something good to learn, just in case. I truly hope you get the answers you need (and quickly - mid-May for cadiology is mad!). Please let us know how you get on chicky 🌟💗
I haven't had seizures but I did have a wierd experience in my daughter's garden when everything..colours, smell n taste went all over the place..that was scary let alone what happened to u!!
I can help u with the EEG procedure..I wanna reassure u that it's not like MRI scan..they put electrodes on your head to measure brain function n will just ask questions n do a bit of light flashing but your comfortable in a chair..they just want to record how u respond to different stimuli.
It definitely sounds like u got good care going on..except of course the esr business with the nurse..ignore that stuff n please try not to worry too much because we all know.....Stress Drives Lupus!!
I would agree that it would be a good idea to go out with someone for the time being in order for u to feel supported until u get a better handle on things.
Another thing I would say is keep a list of meds your on n maybe an indication that this has happened..pop it in your bag so u feel a bit more confidence with going to town..(accompanied if poss) 💐xx
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