Hello everyone!! I know it has been a very long time since I have been on here but my health has been dreadful the last 4 MONTHS!
Started on 20th of August put my contacts in as we were going out for a lovely lunch, half way through the meal I thought oh no I have put them in the wrong eyes (right eye much worse vision).
I felt rather fatigued and thought I would have a lie down for an hour, I woke the next morning!!! Opened my eyes full on diplopia which was my first symptom on my MS journey 11 years ago.
Went to A&E to be admitted for I.V steroids have not had them for 10 years so no worries there, they were really lovely and when I was finally hooked up they said I could go home every evening 3 days infusions all good. Started to improve and the vision was almost back to normal, the local neuro said I didn’t need any oral steroids to help and I just had to let time be a healer. Hmmm
Jump to the end of September vision worse than ever and I had no muscle control at all, legs not working, tremors out of control and no way could I self-cath. Now in October we went to see a private neuro who prescribed oral prednisilone high dose via my GP I am on a reducing dose now and things are very slowly coming back together.
Wednesday I had a supra-pubic catheter fitted I was very wary when it was first suggested but now I am telling myself why were you so anti having it done?
I think it was a bit worried about looking like an old lady!! But hey there we are. Oh and just a little end bit I am due to go to the John Radcliffe end of Jan beginning of Feb for DBS to get those stupid tremors under control.
Golly I have written a small novel here apologies if it makes your eyes hurt!! Julie x
You have had quite a time this last few months. Hope you are now back in control. l have had a SPC for 20yrs now - so do feel free to message me if you need any advice from an old hand.
Soon you will be enjoying all the advantages that the boys have - peeing standing up! and leaving the lid up!! l have also been able to empty my ‘gadget’ whilst on horse-back. But then - that’s the sort of girl l am.
Hi Julie, you’ve had a rough time lately, haven’t you? Hope things will be better once you’ve had the JR appointment. I’ve had my SP for a couple of years now with no problems, it’s certainly made life easier, best thing I ever did!
Wish I still had my horse!!! I still miss him 11 years down the line I am very jealous you managed to empty your s/p on board!!! Mine was however a nutter and would have taken the opportunity to “dump and run” 17hh thoroughbred, could be a super star but fairly high octane whizz factor!! Keep riding as long as you can and give your horse a treat from me!! Julie
I’m 3 years down the line. I have to say that SPC combined with Botox is one of the best decisions I ever made. I feel so much more in control of my bladder and my life. No more “where’s the nearest loo” I’m waiting for more botox, I left it too late and I’m hating the worry of leakage!
Hi again. I do hope my recent experiences, with my spc, haven’t worried yo hun. I was fine for a long time and I will be again. Having an SPc iats defo a million times better than not having it.
Thank you so much everyone, I am feeling loads better than I was, I really hope I can start driving again this week! If I can get out of the house my brain will undoubtedly improve. No idea why I am awake at this hour but there we go you all take care and have an awesome Christmas xxx