Hello Everyone- I wanted to connect with some people who have gone through what I am going through. I was diagnosed shortly after New Years 2014. I presented with inability to void, and weakness in the lower extremities which progressed to being paralyzed. I also had short term memory problems and optic neuritis which caused a lot of double vision. Since then, I have completed inpatient rehab and am currently doing outpatient rehab. My outpatient rehab involves robotics therapy using the Lokomat. My memory has improved practically to baseline, my optic neuritis has resolved. I have regained most sensations, now including temperature and water on my legs. I have moved toes from time to time, but has not been consistent. When I try to move something deliberately, I have intense feelings in those regions all of the time. Also of course intense burning and spasms have become part of my life.
I wanted to talk to people who had ADEM and recovered. I'd love to hear how everyones recoveries progressed, and any tips to get through this awful thing.
Hiya - sorry you've been hit but glad to hear things are getting better. ADEM is a bit of a beast and unfortunately the best healer is time (and high dose steroids).
I got out of the hospital about a year ago and have been largely fortunate in recovery, though I would say it took up a good six months, and honestly I have no idea if I'm back to baseline on some things.
The positive is that in practically all cases I've read on or been told about by my GP there is almost always full recovery, though the timeframe varies hugely.
I had some of your symptoms but not all, plus a few others. Mine progressed from blinding migraines to inability to pee to being sick alot. The first time I was admitted for less than a week and given the wrong pills, so I relapsed about two weeks later and went to another hospital (Charing Cross in London for any Brits, couldn't recommend it more). They blasted me with antibiotics, steroids and acyclovir as they didn't know what caused it - unfortunately they still don't.
Main problems were aphasia and memory loss, both short and long term. My speech came back to normal fairly quickly but I had difficulties matching names to faces for a long time (during my aphasic period I was also swearing 'freely and profusely' to quote my neurologist). Weaknesses and loss of sensation also improved within a month or two. .
Progress was slow but it does come along, and I've been back at work for a good while now. As far as I'm aware the only problem I still have is my memory, which was never great anyway.
Hang in there, it gets better. Not sure what your support network is like but it helps to talk - I'm very lucky in my girlfriend and family were very accommodating, particularly when putting up with mood swings on the steroids!
You and I have had very similar experiences! I'm almost 1 1/2 years out, and I'm still in the swearing and cannot match names or faces. And when I'm really tired (which doesn't take much), I have no verbal filters and I have trouble peeing.
To Newbie,
I agree. Time is the one thing you must allow for, and God only knows what will improve or not. I'm in the throes of applying for Social Security disability, and I have a feeling I'm "too well" to qualify! And yet there are days I can barely walk or raise my arms! And I cry all the time as well as curse.
But from 1 1/2 years ago, I am amazingly better, so time is the thing you must allow. I would also recommend finding a counselor (which I did) as this is a life-altering experience.
I am a one year out and things have greatly approved. I still have symptoms in my hands, but things are much better. I improved after 4 1/2 days of steroids in the hospital and time has taken care of the rest. Keep your immune system up, stress down and get rest. Be positive and patient.
Newbie. You will learn a lot by going thru some of the past discussions. I recently did that and got more of my questions answered in regards to my husband's recovery process. Right now I am learning that stress and overdoing things is an enemy to my husband. Today for instance, w/ it being Mother's Day. Family was over most of the day, and after everyone left I realized Mario was barely able to speak or get up. I had asked him several times during the day if he wanted to go lay down and he said no. Learn your limitations and don't be afraid to say you have had enough, or have someone who will recognize you are done and make you go rest or stop. I feel I should have made him go rest, but I am still learning and each instance seems to be a little different. Hang in there and allow yourself to heal. Sylvia
Like Lynn said try and keep stress down. I notice that when I’m stressed I feel so low and get easily frustrated. I’ve only been out of rehab since aug 2013 but I am getting there. It’s getting there now. Still have the shakes but not as bad. Keep fighting and think positive
Oooo that's quite interesting as I haven't been able to find out much about the swearing thing! Did they ever find out what caused yours? They tested me for everything under the son (particularly things I knew I didn't have!) but their best guess seems to be flu.
LauraK said:
Skittles,
You and I have had very similar experiences! I'm almost 1 1/2 years out, and I'm still in the swearing and cannot match names or faces. And when I'm really tired (which doesn't take much), I have no verbal filters and I have trouble peeing.
To Newbie,
I agree. Time is the one thing you must allow for, and God only knows what will improve or not. I'm in the throes of applying for Social Security disability, and I have a feeling I'm "too well" to qualify! And yet there are days I can barely walk or raise my arms! And I cry all the time as well as curse.
But from 1 1/2 years ago, I am amazingly better, so time is the thing you must allow. I would also recommend finding a counselor (which I did) as this is a life-altering experience.
My experience matches what others have said about trying to keep the stress level down and also getting a lot of physical rest. In the end, I think one's recovery largely depends on one's body healing itself, and low stress and rest help your body do this. The temptation for many of us might be to try to do too much too soon.
hello @Surgeon_girl I was diagnosed at mid 2014 as well, and suffered with similar symptoms (I was paralyzed from the neck down), although had no vision problems. What helped me the most while hospitalized was “plasmapheresis” and steroids of course…
Today I still need cane or some other support when I walk, I cannot run or jump - but other than that I am back to normal both cognitively and physically