Acute Disseminated Encephalomyelitis (ADEM) Support Group

About my symptoms


#1

for me it's very difficult to talk about because my english is not perfect at all, and because this is the first time that i show my emotions, but i decide to talk with you all...

Since January i have problems with my hearing, my left ear hurts and i hear voices and noises louder and louder. My left hand pins and needles, like the left part of my head. The sight is split in two.Ifelt like a tremor in my legs. One month before i felt bed,I had some problems of incontinence.

Now every 3 month i do a MRI and the situation is stationary, but i feel tired every day and some of the symptoms sometimes return ad go away. I would ask you if you know something about how the sight remains split in two, about your experience.

Thank u all.


#2

your english is as good as mine and I'm a native speaker! :)

I hope others can give you good advice and information.


#3

Hi Valentina,

I was diagnosed with ADEM at the beginning of this year (in February).

I did not experience any problems with my sight---that I remember. I virtually forgot the first 3 months of the illness. I was completely paralyzed, catatonic and suffered from vivid dreams. I also was also unable to urinate and was completely dependent on characterizations until about two months ago. The other side effect that was very painful and frightening were severe muscle spasms.

I am so sorry to hear about what you are going through, but I can tell you this: I am about 95% recovered. I'm running, jumping, reading, cooking, DRIVING! Recovery goes by so quickly that it is easy to underestimate your achievements. To this day I, like you, feel extremely tired and want to take a nap every day (not very productive when you are 25 and trying to get your life started). But I try and fight through it.

Have you heard at all about Susannah Calahan? Her book, Brain on Fire, talks about her experience suffering from a rare type of encephalitis, and she mentions that her sight was split in two. In fact, she tells of how one psychologist asked her to draw the numbers of a clock and she put all the numbers on half of the circle. Check out this interview: http://www.youtube.com/watch?v=5xT6BIFv-IE

And she too seems to be fully recovered..

I wish you a full recovery and hope that this information is at least encouraging. Keep fighting!


#4

Hi Valentina,
I was diagnosed with ADEM in August 2012. I had just given birth to my baby 3 weeks prior. I went to the ER because I could not urintate. I was sent back home with a Foley catheter. But 4 hours later, I could no longer walk. I was so disoriented, weak, and my husband rushed me back to the ER.

I was in the hospital for 5 days, given IV solumedrol(steroids). I could not even lift MHD head up, let alone move my body. By the 5th day, I was walking with a walker only a few steps. My balance was off, my legs weak, my arms weak, I was numb from my neck down. Also, I had like double vision, I had to close one eye to see straight.

I went home with a walker, and extremely fatigued. My husband would help bathe me, and take me to the bathroom. (I started improving, didn’t need the catheter anymore, but kept track if my bladder was emptying.

I had severe memory issues, emotional issues, anxiety, panic, etc. I couldn’t remember ho to turn on the washing machine, or if I had already shampooed my hair. I also felt pins and needles, tremors, hearing issues, numbness, dizziness, cogintive issues, extreme, extreme fatigue.

My 3rd MRI has come back normal, thanks to God, and my very, very clean eating. I was on a strict diet that would maximize my central nervous system healing. Pretty much it consited of whole foods. Vegetables, leafy greens, grass fed beef, chicken, salmon. 2 pices of fruit a day.
No refined sugars, no gluten, or anything processed. If it had 5 or more ingredients, I wouldn’t eat it.

Today, I’m much better. My worst symptoms are fatigue, and it seems that my other symptoms
act up when I’m really fatigued. I start to feel the tingling, prickling, and heat, burning sensation on my back. My hands fall asleep at night, and sometimes my mind is unclear.

I hope this helps.


#5

hi friends! thank you for the comments, i was moved by your words. Some of the symptoms you describe are the same that i feel but yesterday i forgot to write them all. thank Mijita for the link, i will read immediately! Thank CLoza256, i will talk about what u write about your diet with my neurologist! I keep on fightin' and i'll never stop to thank you for your support that make me hope for a better future!


#6

auto immune disorders share more than most people realize. They all attack in their own special ways, but essentially they all revolve around one issue - part of the body at war with itself. My mother, my sister, myself and my daughter - we all have auto immune disorders - and each one different. Yet we have similar symptoms of fatigue, soreness, stiffness and inability to deal with stress well.

It seems then that some of these symptoms we go through are just part of having an auto immune disorder. If we aren't sure about some of the issues with ADEM, we can look at other auto immunes and see how we are similar and learn more. Perhaps this will help us some.

Greta has experienced ringing in her ears, since ADEM, but the doctors said it was unrelated. I'm not so sure, but time will tell.


#7

I’m exactly like Loza, my fatigue problems are bad but I can’t sleep so I can’t win but like you I couldn’t walk, talk, swallow and I didn’t even know what to do with a toothbrush and hair brush when I was given it in rehab but luckily I’m getting there but I know it will never been 100% but I can cope with cognitive problems as long as I’m walking and talking again.