Hi, I’m messaging you all from my comfy chair having eaten cheese on toast and a cup of tea - who knew these little things would become so great after spending 7 weeks in hospital! So in December I went into hospital and have now been home for a week - the doctors were undecided about my ‘label’: encephalitis, NMO (I tested positive for MOG antibody) and various other names were discussed but ADEM was what is written on my discharge letter and the advice to get as far with physio/rehab as I can in the next 5 weeks and we will then re-discuss what has happened to me and my label.
So I suppose I’m writing this to ask for your recovery stories; is it unrealistic of me to be aiming to return to full time work at some point - fatigue kept on being highlighted to me in hospital! I was a full time teacher with management responsibilities, 2 young children and I didn’t look after myself enough - I am planning on making positive lifestyle changes (so far I’ve looked into yoga -when I’ve got control over my legs) but, at 37 years young, would really like some people to just let me know what’s happened to them - I’ve googled lots but not found out too much actual information!
Also this MOG result is confusing me (and my consultant) and I’m not sure how I would be being diagnosed with NOM over ADEM!
Anyway, really wanted to just say hi - I’ve been reading some of your posts and have already found this group immensely helpful!!
Congratulations! That is excellent news. Nothing like being able to come home.
Yup fatigue is a big issue. It can be really surprising how it shows up at unexpected time. Mostly it is times you would never have expected before! Be patient with yourself. Give yourself a break. Survivors are usually the absolute harshest critics of themselves! So give yourself a break and have a great continued recovery.
Hello. So another Christmas time patient of the neurologists. Are you in UK or USA? The way you write about cheese on toast and a cup of tea sounds like a Brit. Just wondering which area and hospital you are? When my daughter heard about the anti-MOG-antibodies and spoke to other medics about it they all comment ‘must be London’.
I ensured daughter had lots of plain bio yoghurt with berries in the beginning, when she learnt to eat again, and she now takes Brainsmart which are fish oils. Who knows if these have actually helped her on her way but she still has symptoms a year down the line with vision problems still as she first got hit with the optic neuritis. Jessica is back at full time work. She started off 2 days per week, then 3 and onwards. Because of her vision, the uni she works in were very good working alongside Access to Work with a larger screen and be different keyboard. I believe though, that the stress of responsibility of management might not be doing her any good. I wish she was able to do a 3 day week and be able to take it easy for longer so her body can recover from fatigue easier. Her vision has improved but we suspect that because of damage to her optic nerve discs that it might not get much better. A worry as she is 32 and unmarried.
So Bella, have lots of rest and fresh air and eat well and have lots of physio. Jess found an ADEM page somewhere on Facebook and there is someone on it who also had the anti-MOG antibodies (which we learnt about last week) and is actually taking tablets to help with his immune system. Am now going to start checking up on NOM. Neuro wasn’t 100% sure on the ADEM, it seems.
I do wonder whether ADEM patients having stressful jobs is a key in all this. Interesting your flu vaccine sounds like it was more than 3 weeks before illness. Jess had it about 6 weeks before and neuros won’t acknowledge it much.
Enjoy your home comforts and I think it’s an idea to write your memories down because further down the line, we can’t remember all the doctors and other patients’ names and all the other illnesses that pop up along the way because they all seem to be linked one way or another.
@Bella, @jmb- do you mind share the treatment you were given while in hospital? If Steroids- what was the dosage?
I believe I was mistreated and therefore still trying to recover 3 years later…
I was in a coma for about one week. Why so many hospitals??? Guess I was very sick. And, according to my husband, the indurance company had “guidelines.”
I was in the QE Birmingham, England. Whilst in ICU I was on 1000mg of steroids and then went to 60. I’m now tapering down weekly and am currently on 30mg. I didn’t have any jabs previously but my son did hAve Scarlett fever which they think may have lay dormant in my body. I’m a bit worried about coming off the steroids to be honest as I’ve heard horror stories!
