Need your positive thoughts please!

Dear all,

Please can you all keep your fingers crossed, toes crossed and send positive thoughts! I am due to go into hospital tomorrow for LP and trial on IV steroids, I was bumped 2 weeks ago due to lack of beds and can’t go through that again!!! I am pinning all my hopes on this treatment controlling the neuro symptoms I have had since September with little relief and I haven’t worked since Christmas. MRI has shown a few brain inflammation spots and one in my c-spine.

So please positive thoughts that I don’t get turned down again when I ring at 7 tomorrow before I am due to travel the hour plus to the hospital.

Thanks Di x

Hi Di, Sending you lots of positive though and hugs, hope it all goes as planned. Well I’ll give you my update as I’m here, saw GP as planned this morning, confirmed MRI did not show bony problems causing pinched nerves. Due to worsening eye problems (pain, blurred, floaters) am having urgent tee test today, seing GP again this aft, and may be admitted today for IV steroids depending on results. Also have very low vitamin D levels, to which am shocked as have mainly Mediterranean diet with lots of fish and like the sun. GP was good today, she did say lots of symptoms are in keeping with MS and got choose and book referral to neurology, 7th April, which I think is pretty good. I’ve had a bad week, weekend with balance probs , facial pain etc. So we may be in at same time? I’ll let you know later. Take care Ally x

Di You’ll be fine this time, it’ll all go according to plan . Good luck Gray x

Hi Di, here I am, sending you oodles of warm hugs and positive thoughts for your hospital stay tomorrow…it will go well…it will go well…it will…

luv POllx

Hi Di, My eye test showed no problem with optic nerve, which is great, so no admittance today :slight_smile: Very thorough tests showed many floaters, dried out eyes which is accounting for the painful spasms to left eye? Vit D level was 16, prescribed desunin for 12 weeks. Neuro 7th April. Sick note runs out Friday so will be back next Monday (if able) been referred to occ health though. Will be thinking of you during your admittance and hope the steroids help. Take care Ally x

Hi all and thank you for​ your replies. X

Ally seems like things are moving quickly for you at last, 7th April is not bad to be seen. Go careful going back to work I always thought I was ok to do a shift until it was happening! Keep me posted and I will let you know how it goes, also have found OH to be worse than useless! All my stuff has been sorted by my mentor group leader (band 7). Just out of interest where abouts area you in the country? Can PM me if you wish.

Di x

Thanks DI, sent you PM Ally x

Hope all goes well tomorrow Di, and that there is a bed :slight_smile: Faith

Hi all out of the blue have had a phone call to say they have 1 bed coming available tonight at 10 and if I want to secure it had better go down tonight. So panic packing and settling my girls with their grandad as although they are 12 and 14 its still a bit of shock. Fingers crossed will be in touch.

Di x​

Good luck Di x

Good news, wish you luck Gray x

Oh, how ridiculous Di! So you’ve got to go to hospital, spend an extra night in a bed that isn’t yours on a busy ward just to stop them sticking someone else in it? Can’t they get some “reserved” signs? Maybe you should take a large teddy, leave it in the bed to “book it” and sneak home to your own bed again! Hope you sleep ok, and that all goes well tomorrow. Faith

Morning all, Getting in the bed at 10 wasn’t do bad got a decent amount of sleep, probably more than I would have done if I’d been worrying if I was going to get in or not, then having to be up at 6 to get ready, phone in and travel the hour here. Tonight 4 hours sleep and wide awake and raring to go god bless IV steroids. LP went as well as could be expected! However ICP turned out to be 36.5, in other words blinking high! Thought how my eyes were feeling wasn’t too bad till the pressure was drained now they are much better! Various bloods sent and tests ordered for the many vials of CSP. Let’s see what is next! Di x

Hi Di et al Hope it’s going ok, your missing some sunshine you know! I had a real vit D top up today with a little walk and garden sitting. From other post - yes I’m surprised you hadn’t had bad, bad headaches with the pressure I saw physio again today, more excessive to do to stop seizing of muscles further. He told me off though for overdoing it at times. I’ve spoken to work, am going in Monday on phased return, will do mornings only next week, see how it goes, gonna do admin stuff. Will be on hols 27th anyway so not long to do. Are the steroids making you hungry? Quite lively I guess? It seems to work well in treatments for other conditions even palliatively. Enjoy the rest of your mid-week break Take care Ally xx

Yeah quite lively! Resting heart rate of 106 and palpitations aftertoday’s dose. At least I had them earlier so should get a bit more sleep tonight. Also nearly got in confrontation with the night nurse who came on as did not seem bothered about the GCS of the lady in the bed next to me who had vacant episodes. Told me not to worry and pulled the curtain on me, basically told her that she was right and it was her responsibilty not mine. Have withdrawn myself from the situation was not helping my palpitations! Grrrr’

Hi all just to say still in all not exactly going to plan. Vision issues which I had not really worried about are causing big concerns. High pressure on LP and in eyes too. More tests an trying to see if there is a link between neck lesion and pressures. If there is it is more likely we are looking at sacoidosis but we will see. Di x