Hi all - well it looks like my symptoms of the intermittent dizziness and disorientation are a relapse (hopefully a mini relapse) - spoke to one of my consultants secretary this morning and we decided steroids are the way forward due to the fact that I seem to have multiple autoimmune conditions going on that they are still looking into. So I’ve got probable ms and lupus and they are also looking into other conditions such as neurosarcoidosis (I think I spelt that right) and also other conditions (I’m a complicated case) So I was right last month when I had uti, chest infection and sinus infection all at the same time that my immune system was kicking off and as predicted I suspected that it would bring on a bit of a relapse! If only they had listened to me and given me strong enough antibiotics and a long enough course of them then I may not be having a relapse. And I do have a uti still which I’m on antibiotics for now. It never rains it pours right! Still got to keep smiling
Sounds like you are in the wars. Glad you are getting sorted now and hope you soon feel better. xx
Thanks stans mum
Well today I am stressed and have lost faith in my local hospital! Consultant faxed over a letter on Friday to the gp for a prescription of 500mg of methlypredisolone for five days - fax didn’t get there until 5 o’clock - waited and saw the gp who did a urine test and then wrote out the prescription - should could only write out 100mg dose to be taken 5 times a day over 5 days (so 25 tablets worth). Went up to the big boots pharmacy which by the time I left the doctors was about 6:30. Pharmacy said that they don’t stock it and would have to order it in which means it won’t be here until Wednesday afternoon - he said with that dose I was better going down to a&e with my letter and they should be able to organise it or organise an iv as he thought it was too long to wait till Wednesday. Well to cut a long story short the hospital was a disaster! They couldn’t organise it - kept me there for 4 and a half hours - told me if I came back at 10am today it would all be set up and waiting and then I can go in every day for my iv. Got there at 10am - they didn’t know about it as information hasn’t been handed over - even though the doctor last night had written a letter to the doctor for handover. Waited until 1 o’clock by which time they had just taken bloods - told me it would be at least 2 hours wait as had to wait for blood results. Well that was enough for me I’d had enough! So I got the doctor to phone boots pharmacy to get it ordered in - they are doing a fast order so it will be here Monday. What a load of palava!! More importantly the hospital was completely useless some of the staff were ok but sadly there was a lot of bad staff and staff that weren’t clued up about anything! Also made assumptions the whole time that I’d had a definite diagnosis of only ms even though I kept telling them that I had multiple autoimmune conditions and was still under investigation for them! Stressed to say the least- sorry for long post just very frustrated and have nobody to vent to!
What an absolute nightmare!!
I know when I was prescribed Methlypredisolone a couple of years ago I had to try several chemists and when you feel unwell this isn’t right. And what was happening at your hospital?
It sounds like there has been a lot of blunders over this.
What the hell is happening to our beloved NHS!!!
What a nightmare Karina. I hope once you get the steroids that they kick in quickly and you start to improve. Hope the UTI goes very soon and you start to feel more like yourself soon. Teresa xx
Sounds like an awful way to spend your weekend, hope you get them on Monday as planned without any problems. Not sure If your talking about st peters but if so i can completly agree about the uselesness of it, experienced it myself many times I hope the symptoms ease up a bit for you - take it easy. Laura x
Yeah St. Peter’s is where I’m talking about - useless and completely unprepared. I’m feeling awful today my brain is completely misfiring signals and having lots of dizziness and shooting nerve pain and finding it hard to function property and can’t move about much. I’m really hoping that the steroids tomorrow work as I’m starting to worry
I avoid St. Peter’s at all costs - never had a good experience there. Kingston (although a bit of a mission) is far superior. Could be all the stress of yesterday affecting you maybe? Have a good rest today and hopefully the steroids will help, good luck. x
I will bear in mind about Kingston hospital - thanks for that tip- I’m guessing they have an a&e department and probably a neurology department so know a bit about these blasted auto immune conditions! Fed up!
Hope today goes better for you today. What a nightmare.
It seems nigh on imposssible to get high dose steroids now. I had to try 2 pharmacies back in March and only one of them could get them in for the next afternoon. It means a 2 day delay in starting to take them which, at the start of a relapse, makes a big difference to your symptoms. I tend to go downhill fast once I get to the point where I know I need the steroids but the steroids nip it in the bud so I wanted them quickly …
Anyway, I think the IV steroids seem to work even quicker so I’ll be thinking of you and hope you see a big improvement in the next couple of days.
Thanks Tracey - got a neighbour picking up the steroid tablets this afternoon (provided that they arrive - fingers crossed) so hopefully will start to feel a bit better in a few days time. I hope the steroids work as have to trek up to London next week which will be soooo hard if the relapse is still in full swing!