Name of condition:Acute Disseminated Encephalomyelitis (ADEM) with visual problems (difficulty with accommodation/ convergence - brain not recognising signal)
My Symptoms: Dizziness (some vertigo), Visual problems, muscle weakness, tingling, numbness in certain areas sporadically, headaches, extreme fatigue.
Experience: It took a while to get diagnosed as I had to undergo lots of tests to check it wasn't MS (Multiple Sclerosis), especially as I had a number of set backs, which could indicate further inflamation. Basically, I had a viral infection a few weeks before and I'd also just had the MMR (which also causes this). I had a week break from being ill (quite typical) and then I suddenly was incredibly dizzy and my vision was slightly blurred (but I wasn't reading so didn't pay attention to it at the time, thinking it was just an ear infection). The following morning I woke up very dizzy still and noticed that I couldn't read- my eyes wouldn't focus, which led to a trip to the emergency doc who gave me prochlorperazine for the dizziness, but was useless about the eyes ('that shouldn't happen' was about all he said, although advised me to go to eye casualty the following day if I still couldn't see). I went to eye casualty, who thought it was a migraine, but I was getting worse to a point I could barely walk. Being at uni, I asked my parents to come get me, which they did. I saw my GP at home who thought I had nystagmus as an effect of Labrynthitis and was prescribed steroids (as luck would have it, the usual treatment for ADEM). When I still hadn't recovered after a month (could barely walk- it took me ages to just get from one room to another), I was referred to Ear Nose and Throat who ran lots of tests (found that my eyes weren't tracking properly) and referred me for an MRI, just as a precaution. When the MRI showed up some white matter damage (very scary phonecall!), I was placed under a neurologist who did lots more tests (evoked potentials, lunbar puncture, 17 diff blood tests, chest xray) and also referred me to an orthoptist (the first time anyone had actually addressed my eye problems!!). My tests all came back fine, apart from a few bloods, which when re-tested were ok, so the only problem was the MRI, which led to the ADEM tentative diagnosis.
I did have a big set back about a year later in the October, when my left leg went numb and I was very dizzy again, which took me about three weeks to recover from. I had another MRI (brain and spine) which showed no change so I avoided the MS diagnosis, although the neuro did think it was an episode of spinal chord inflammation. I also have had other set backs (dizzy episodes, legs giving way, severe headaches), which initially there was no explanation for- apparently they weren't severe enough to indicate MS, and so I was/ am playing a waiting game for it to either go away or for something to happen again (but I don't think it is MS).
Eye problems: Lots of difficulty getting this diagnosed or recognised! At my local eye hospital they diagnosed me (after lots of people coming to see me because I'm an 'interesting' case and apparently my symptoms are v v rare) with paralysis of accommodation, but didn't know how to help me, so I was referred on and am now under Moorfields, who at least have some experience with people with my post-viral sort of visual difficulties.
Personal advice to anyone (remember to keep this away from medical advice):
MRI SCAN- What to Expect:
If you're claustaphobic ask for a sedative, but I didn't find them that bad. If it's a brain scan, you don't go in too far into the tube and can still see out a bit, but for the spine you have a board strapped to you (as well as the cage bit over your head), which is a bit more claustaphobic. The radiologist can talk to you though at times and ask if you are ok. You're given an alarm you can squeeze. They also put music on for you (although as the machine is loud you can't hear much of this). It's worth taking your own CD with you if you can!
Also, don't wear anything mettle- it interferes with the machine. Girls, wear a support top if you can instead of a bra, as it saves you having to change into a gown. A long top with leggings as well as this had always been what I've worn!
LUNBAR PUNCTURE- What to Expect:
The proceedure itself is ok, albeit slightly uncomfortable. You're laying on your side when they put the needle in. Afterwards my back was a bit sore and boy did I get the master of headaches! Definitely stay lying down for as long as you can! I think that was a mistake I made!
Other Advice:
Coping with fatigue can be horrible and incredibly frustrating! Try to keep in contact with your friends, although you've obviously got to limit the time so you don't exhaust yourself. Try to get into a routine. Take vitamins (I don't know how much they help but worth a try). Try to stay positive. Try alternative therapies (I've tried hypno, cranial osteopathy, pilates, etc). The big don't is: DON'T DO TOO MUCH. Also, look up THE SPOON THEORY. Incredibly useful thing to help you to explain how you feel to other people.
Join a support group. Having a rare condition can be frustrating as there are few people who have experienced it, but can join a group close to it (I've joined an MS forum, for example), and create one on Facebook. I was able to talk to a few people about our experiences, which has been very useful, even if it's just to rant.
Okay, so being ill for a long time might change your life and it might be completely different from what you expected, but realise that there are positives. With me, for example, I was going away for uni but I had to come home. After a year of rest, I went to my local university. I may not be able to have the same social life as other people, but I do have a lot of friends from home originally, who have really helped me through this difficult time. I also think the uni I'm at now is better for me (in terms of courses) than the one I was at. As I'm living at home, I'm also able to have more money than I would otherwise have.
If you need to, use the Disabled Student Allowance- this has been amazing and helped me so much! The university disability people have also been incredibly supportive.
KNOW YOUR LIMITS. This is something I'm still learning, especially with my eyes and headaches. But stop when you need to (easier said than done, I know!)
If anyone wants to chat about this or a condition similar or anything, please feel free to PM me. I know that sometimes just having someone to listen to can help.
Take care :-)