Acute Disseminated Encephalomyelitis (ADEM) Support Group

My experience with adem


#1

I was a very healthy working professional I am an RN who is in charge of education. 4 weeks prior to this sudden illness I recieved my annual flu shot as I always have done. I had some muscle aches for a few days, before I got sick and thought it might be from my cholesterol medicine, so I went to see my PCP ton 10/28/2011. He ordered bloodwork which came back perfectly normal, no sign of any infection or virus. On 10/29/2011 my husband heard the water running in the bathroom and came in to check up on me, I was on the floor, he called 911 - they transferred me to the local ER. I was confused and they had to sedate me, intubate me,etc. They did an initial spinal tap which was normal. They could not figure this out as all my tests were coming back normal, so they transferred me to a larger teaching hospital, where after the second spinal tap and an MRI the correctly diagnosed adem. I was put on high dose steroids and was on a ventilator for 12 days. I moved out of ICU, and was sent home 3 days later. I am still recovering, I am getting home therapy now, hopeful to move off the walker to a cane next week then start regular outpatient therapy. Still a little foggy at times, but seem to be able to think clearer every day. I am very impatient to get better, but scared of some permanent damage. I definitely have some right sided weakness, and some fine motor hand issues. I also notice the lower the steroids go (I am still tapering) I seem to have more headaches. I also have always been upbeat and positive and will find myself start crying for no reason. I know I am still in the acute recovery phase, but I seem so anxious about stuff now. What a very scary experience the whole episode was, and I am so thankful to be alive! How has the recovery process gone for others. And has anyone else suffered this after the 2011 flu shot?

Just an update on my status. I have returned to work as of 1-2-2012 part time, and plan on returning full time in Feb. I am totally off steroids, and my headaches have lessened. It seems good to get back into a normal routine. Cognitvely, emotionally, and physically I am doing pretty well. I am having a repeat MRI on 2-3-2012, so hopefully all will be improved. It was a very scary and life changing event. Happy New Year to all!


#2

Hi Pamela - wonderful of you to share! I'll check around on the flu shot. This is a brand new group, so give it a little time to build up. we've built 29 of these support groups. :)


#3

thanks for sharing so much Ken!


#4

Hi Pamela -

Thank you for sharing your story. My son was diagnosed with ADEM this past summer after suffering from a fever of unknown origin for approximately 3 weeks. The onset of ADEM was very rapid, within 5 days he went from a normal kid to a child who was unable to open his eyes. I can relate to your experience, it’s incredibly scary. Now 4 months post diagnosis my son is back to his old self and if you didn’t know he had been sick you would never know he had been in the hospital.

My son was treated with one dose of IVIG (they would have used a steroid but they were afraid the steroid would lower his immune system which would be dangerous if he still had a virus) and spent one week in the hospital post that dose. After that he spent 5 weeks in inpatient rehab. When he went into rehab he could not speak, hold a spoon, and could not situp without being supported by pillows. Walking was not a possibility let alone standing on his own. Then, after 5 weeks of rehab he could walk, talk, and feed himself.

From my experience you will have good days and you will have bad days, mornings will be better than afternoons, but you can’t measure your progress in days or hours. Measure yourself week to week and month to month. One day we were celebrating that my son could say one word then within a week we were celebrating short sentences. Day over day the progress was not that obvious but when we looked at his progress each week it was staggering. People who would only see him once a week were constantly amazed even if his progress was less obvious to us who were with him every day. If you feel like it, keep a journal (we kept a blog) and track what you can do on Monday of any given week, then compare the progress you’ve made. If you ever need a pick me up, trust me this will do it for you.

The recovery from ADEM is a 6 - 12 month process so don’t get discouraged, just keep plugging along and with time you’ll get back to where you once were.

Good luck to you and your family!


#5

Hi Pamela. YES! I am also an RN and I have suffered ADEM symptoms three of the past four years following my annual flu vaccine. I nearly cried when I read your story to learn that someone else has shared my experience. Three of the past four years, I have had months-long bouts of vague neurological symptoms. In 2008, when the first one happened, I was hospitalized and worked up for TIA following an episode of confusion while trying to count meds. My labs showed nothing but widespread inflammation and my MRI showed diffuse nonspecific white matter lesions. The neurologist wanted to do a spinal tap to rule out MS, but I refused and just waited it out. In 2009, I had no symptoms, but had them again in fall of 2010. This October, I started having migraines, extreme fatigue, brain fog, parasthesias, eye pain, visual changes, flashes of light & floaters, incomplete bladder emptying, Alice in Wonderland syndrome, expressive aphasia, cognitive difficulties, shooting limb pain, vertigo, loss of balance, etc. I was worked up for Lupus and RA -- both negative. I have an extremely tender area over my thoracic spine, so I started taking ibuprofen regularly and, lo and behold, my neurological symptoms started resolving. I have prescriptions for MRI/MRA's of the brain and spine, but have come to this self-diagnosis after checking with the Employee Health Department at my hospital. Guess what I did differently in 2009? Declined the flu vaccine! Bingo!

I can't believe it has taken four years to put the pieces of this together. The symptoms are vague and frightening, but not debilitating -- but they last so long that I start to fear that I am dying. The confusion is especially distressing. Tracing back this year, I found that my symptoms started about a week after my flu shot. I have gotten my cognitive function back almost 100% and the only symptoms that are still lingering are occasional crawly feelings on my scalp and occasional burning in my legs. I still plan to have the MRI's done, but I am pretty confident that I have solved my own puzzle (with the help of my medical training and Google). :-) I will be discussing this with my PCP at my follow-up appointment, but I can honestly say that I will take my chances with the flu from now on.

Thank-you so much for sharing and I hope that you are feeling better.

Best Regards,

Patti Bornes, RN


#6

This is a great thread. You ladies are so strong and amazing.


#7

Pamela. I was also hit with this disorder after getting my final booster of MMR within the month prior to getting my symptoms. I needed my booster for my Reptrax credentials, for medical device sales. Very quickly I was unable to perform my job also. I am hoping I am healing and maybe nearing the end of my torturous year..... but I just don't know because there are not anyone to talk to talk to. I would love some input on how you have healed. It seamed as if you were healing just about the time I got hit with it. I would love to know more about how your year has gone. Julie


#8

Hi Just Julie, maybe you can start a new discussion with the specifics of what's going on with you, that way people can answer directly. :)