EB’s anorexia recovery joutney, jubilee breakfast, MRI,ASC and more!

[@lovelylight80]

I just want to hug you lovely . I am sending you so much healing energy and love

[@edb5224]

Thank you for your kind words Erin, I’m determined to get to a better place and I’m sure in time I will in time. Thanks for saying about the sound. I uploaded a second version which should have improved sound x

[@lovelylight80]

Still struggling with sound issues. I admire you so

[@chloeslater7231]

Just very much sending you love. It all sounds really overwhelming. Can I ask what the two things you said about re Autism and EDs were? What was the very long document (not the NAS Autism passport, the other one?)? As someone who has struggled with AN bp subtype for nearly 20 years and is a fellow Autistic, coordinating care is a nightmare. Especially as in my county there is no real ability for the ED team to provide Autism informed ED care and I'm somewhat deemed as hopeless now. X

[@edb5224]

Thank you Chloe it means a lot to read that 🥰 I’m trying to think re autism and EDs. I think I mentioned a few times the link with at least 30% of Ed’s expected to have underlying autism (diagnosed or undiagnosed) that’s from the PEACE pathway - their website has loads of resources on it. Prof Tony Attwood is an expert in female autism and also talks about the link. He has books and KZbin videos that I’ve found really helpful in terms of things finally making sense. I also mentioned the new MEED document which is more anorexia emergency care it’s replacing the marsipan guidelines. It is useful in terms of anorexia and risk but not for ASC - that section many people have found to be lacking but there may be many reasons for that. I’m so sorry to hear how long you have suffered and how hard you must have fought. Coordinated care is a nightmare and so variable depending on where you live. I was extremely fortunate to get a team that had ED and ASC but realise that is extremely rare. If you have an Ed team or GP who isn’t clued up on autism it might be worth sharing some of the resources I mentioned if you feel you can. Eventually there will come a point where every health professional has to be trained in ASC but that like most things in healthcare is going to take a long time x

[@chloeslater7231]

@@edb5224 thank you so much. I will look into that. I have found so little related to the combination of both EDs and ASC even though statistically it's a lot of us. I hope one day to be part of informing services about this. I hope things will improve for the next generation. Sending you love and very much thinking of you in the coming days x

[@crazyinclarence5531]

Hello sweetie. I had my sound all the way up but struggled to hear you.

[@edb5224]

Thank you so much for letting me know, I uploaded a second version with (hopefully) improved sound 😊

[@andreaodonnell2159]

I had a breast MRI before breast surgery 18 mths ago, 45 mins laying on my front in the machine and I came out, felt weird and before I even got off the bed, I had a seizure so was very traumatic ! Sounds like you have lots going on, I’m awaiting a second EEG next month to see if neurologist will finally diagnose epilepsy after being on seizure meds for 8 months. No seizures for 5 months on meds, then two within the last 3 wks which is very disheartening 😞

[@edb5224]

Andrea I’m sorry you went through this it sounds horrific. I still cannot quite get my head round what does and doesn’t count as epilepsy - I’ve had 2 epileptiform seizures within 24 hours (confirmed by raised lactate on blood gas) and I’ve seen an eeg report which says not ‘definite’ epileptiform in the half hour test. Some how the vocabulary used doesn’t completely reassure me. I’ll see what neuro say when I see them.

[@andreaodonnell2159]

Yeh it was pretty traumatic. I also had another seizure this Monday whilst shopping on my own and lost about an hr and a half of memory, don’t remember getting to the ambulance from the shop I was in and the 25 min journey to the hospital and woke up quite a while later in hospital, with a nurse at my bed saying oh you’re with us now. I have my 24hr ambulatory I think they call it, EEG 7th July abd god knows how long a wait for results. I had one a year and a half ago and it was normal. It is so confusing as you say and not v reassuring , they seem to think because I’ve not bitten my tongue or had any incontinence and usually get some warning beforehand that it may not be epilepsy , that’s the impression I get from correspondence I’ve seen? Not everybody has the same symptoms and is typical? There are so many different kinds of seizures and tbh both neurologists I’ve seen are arrogant and one was downright rude and dismissive! Also it’s pretty common to feel not right and that something is going to happen first? Do these neurologists not know about auras? Fgs it really has been a ridiculously long wait of 2 and a half years now I think. Something like that anyway and had numerous seizures and been put on lamotrigine medication for seizures x

[@andreaodonnell2159]

The first EEG was a half hr one as you say, I’ve heard it can show as normal if no seizure happens during that time which is pretty likely I’d imagine as it’s such a short test, hence this 24hr one I’m having done in a months time, can happen during the night too and more likely to pick up abnormal brain activity during sleep my neurologist says , otherwise might have to change my meds because it was working and now I’ve had a few more , despite increasing the dose. Had a 5 mth break as I say with none. V frightening especially when on your own when it happens and in a public place. Thinking of you and your health too

[@andreaodonnell2159]

Sorry forgot to say no definite diagnosis of epilepsy for me either, hence the repeat EEG , soooo frustrating and the wait to get a diagnosis one way or another !