Acute Disseminated Encephalomyelitis (ADEM) Support Group

Vertigo and paralysis

#1

Hello. My sisters attack was in Sep 2016. She emerged from vegetative state in Feb 2017 but very visually impaired, dysphagia, very slurred speech with very little voice and completely paralysed from neck down. She has made some quite good progress, although slow. She now has limited use of her right arm and her speech is getting more coherent. She still suffers badly with fatigue but has not been affected mentally, just physically The last two months she has been suffering with vertigo whenever she is repositioned or hoisted to her wheelchair. At around the same time she requested that her gabapentin be tapered off with the goal to stop taking it altogether. I was wondering if the vertigo is common after a severe attack, whether its related to the gabapentin or whether it is completely unrelated to ADEM at all. She has also had at different times infection of the big toes. They get very angry and ooze from the bottom of the nail bed. Is this common with paralysis and or brain injury.

#2

I was in a very similar situation the vertigo was unbearable I talked about medication to help but I was told that it was adem related it took a while and did disappear and my toes got infected also I took as a trip I went on maybe there is a connection I am 23 months in still recover at a good rate very long very slow

#3

Hello Dave. Thanks for response. How was you affected physically, at your very worst. How are you now? Do you still get to see a neurologist. The last time my sister saw a neurologist, she was still in a vegetative state and hasn’t seen one for over two years. Only gets to see her GP, who of course has no expertise or even knowledge of ADEM. Have requested a referral to a neurologist, she sees one in August. Sorry for all the questions and thanks. Zora

#4

At my very worst I was in a come lungs shit down plug was being pulled funeral arrangements were made couldn’t go any lower but six feet but for some reason my wife kissed my forehead and I started to wake took three weeks I was paralyzed breasts down slowly start with left thumb on May 5 2017 today April 12 waist up 80% strighting left leg ,starting to move right leg feeling to both feet not the normal feeling but feeling just such dam long process myelin goes 1-6mm a day and with Myelin grown back if any nerve damage 4 weeks a inch at six foot one takes a while as for specialists every 6 months we have video conference but I have a direct email sorry if there’s some jumble words I am getting better memory think

#5

Thanks for all the info. Hopefully we will understand more when we see the eurligist. It is good to hear you are making progress. Do you have to take much medication. Kaye takes quite a few seizure drugs, through a feed tube, she can eat but not chew and has problem with her swallow reflexes, she hasn’t had a seizure for over two years, wondering if she still needs to have them.

#6

And sorry but what country are you in?

#7

Funny u ask I just started weening off levetiracetam 500mg twice daily 2000 mg never had sizeures in my life but was precautionary when I was in coma so far so good on take down

#8

I am in Alberta Canada please feel free to ask questions that come to mind hope I can help some what