Recent ADEM victim with hearing symptoms.

involves demyelination in the spinal cord and in the brain. The demyelination in the brain is different than a demyelinating attack from MS; the lesions are scattered and do not appear in the same pattern as those from an MS attack.

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Recent ADEM victim with hearing symptoms.

Postby b.scheiner » Sat Nov 21, 2009 12:16 pm

Last month I was hospitalized and for 2 weeks was misdiagnosed with a stroke until changing hospital and doctor, then finding out I had ADEM. The first symptom was ear-ringing, distorted hearing. The symptoms came on gradually over the 2 weeks. Facial droop and numbness, partial numbness inside mouth, right-side partial numbness (no loss of movement), slight balance problem, double vision due to eye-muscle weakness, inability to open jaw and chew. No seizures, no fever, no cognitive deficits, no pain. When I was finally diagnosed there was a single lesion, in the left pons area of the brainstem. The doctors said everything was consistent, even to the extent that the nerves affecting the ear, jaw and eye symptoms ran through that area. The doctor got me on huge doses of IV steroids and after 4 days I responded very well. Now I'm on maintenance steroids and will likely be on them for at least 6 more weeks. Numbness is subsiding slowly, jaw is now fully functional, facial paralysis somewhat better (my wife says my smile is almost normal now), balance is much improved. My eye focus is also coming back very slowly. The main thing that concerns me now is the hearing. To live my life with muffled, distorted hearing and ear-ringing is not a pleasant prospect. The doctor, a very prominent neurologist at NY-Presbyterian/Weill-Cornell Med. Ctr., has given me a very positive prognosis based on my excellent reaction to the steroids. But of all the posts I have read here, I have found none by anyone having suffered a bout of ADEM concerning any ear symptoms. Every once in awhile I think I notice a tiny, incremental improvement in my hearing. Has anyone out there experienced any ADEM symptoms related to hearing, and if so, I would appreiate it if you can let me know your recovery experience with regard to these symptoms.
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Re: Recent ADEM victim with hearing symptoms.

Postby tkeys » Thu Dec 24, 2009 7:41 pm

I did experience some hearing symptoms, along with a wide array of other more severe symptoms. I also had a very prominent brainstem lesion, extending into my left pons. I was actually diagnosed with ADEM, then later diagnosed by another doctor with brainstem encephalitis. I think at that point, the diagnosis is not totally important. They know I had demylination in my brainstem, but I have recovered. My hearing was not lost, but for months I felt like I had stopped up ears. I could not hear as well and it was an irritating feeling. I also realized (once the sense returned) that I was unable to smell. I had some weird symptoms. The most severe however where debilitating muscle spasms, balance and coordination problems, gait issues (I couldn't walk unassisted for months). Anyways, I did have some hearing involvement, so I think it must have been the region of the brain. Did you have any other lesions? I only had the brainstem lesion; that is why I was diagnosed with brainstem encephalitis that was caused by an autoimmune reaction (like ADEM is). I don't know that it is really all that different.
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Re: Recent ADEM victim with hearing symptoms.

Postby b.scheiner » Fri Dec 25, 2009 6:41 am

Thanks for the info. My hearing is coming back. The thought of never being able to enjoy the beautiful sounds of a symphony orchestra or other music was very disturbing to me for awhile. But my neurologist assured me that would change, and it is. It's now about 6 weeks since my release from the hospital and unless noise is loud it is almost normal-sounding; if it gets too loud I hear some distortion. But it is getting better, slowly and incrementally. The doctor said I might be left with a bit of tinnitus, but I told him I always had a touch of it anyway (most people do) so no biggie. I was fortunate; though I was misdiagnosed in another hospital for 2 1/2 weeks as having had a stroke, when I changed venues my new doctor knew Iwas very strong and in good shape, and so he gave me super-mega-doses of steroids, which really jump-started my healing. I am way ahead of schedule. I also had double vision, which is substantially gone (still a bit if I turn my eyes to the left, but not much). All the other symptoms are gone to the extent that I can now function normally, and I am assured I will be 100% when this is all done. But the hearing did disturb me the most, and it's nice to know that someone else had the same problem and came through it well. Thanks for the reply.
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Re: Recent ADEM victim with hearing symptoms.

Postby tkeys » Sun Dec 27, 2009 2:53 pm

You are doing awesome if you are only a month or so out and your symptoms are gone. I was not diagnosed for a month after I became ill, and I did rehabilitation for 6 months. I am almost a year since the illness now, and just in the past few months have I felt normal again. I also had terrible double vision. That was quite an annoying symptom. Sounds like you will be back to 100% very soon!
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Re: Recent ADEM victim with hearing symptoms.

Postby Shirley » Sun Dec 27, 2009 8:36 pm

I also have been left with tinnitus, but then I've always liked to listen to music loudly. I hadn't really related it to TM!!
Keep well



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Re: Recent ADEM victim with hearing symptoms.

Postby b.scheiner » Mon Dec 28, 2009 11:20 am

I'm very lucky. I was in excellent health to begin with and my MD was able to treat this very aggressively, knowing my body could withstand it. My hearing is still not perfect but it is at the point at which I can enjoy music and essentially function normally. The only problem I have is when there is a lot of noise (as in a mall, for example), which makes it hard to differentiate among various sounds, but that is becoming better with time. I have tested my hearing on my high-quality audio system with a calibrated disc and can hear all the frequencies I heard before.
It was discouraging at first, since the auditory deficit was the first, and worst, that I got. The doc says they generally go away in reverse order. But everything else has gone away to such a great extent that I'm hoping it won't be long until my hearing is normal, as the doc says it will be.
Yes, I also got double vision. A neuro-ophthalmologist I am seeing gave me some stick-on prisms for my glasses for driving but at this point I barely need them. I am not used to being sick, as I have been extremely fortunate in my life by being very healthy up until now. And I'm not the kind of person to let a little thing like a serious neurological illness slow me down. To everyone else out there, don't ever forget that attitude means a lot. If you don't let this thing consume you, you will maximize your recovery and get better.
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Re: Recent ADEM victim with hearing symptoms.

Postby nikkirost » Sun Jan 03, 2010 11:20 am

In August of 09 my ADEM started. The pain in my neck and head was so extreme I could barely move. My eyes crossed, could barely see, my ears would ring and sound like there was a tornado in my head. I couldn't walk with out assistance, then couldn't walk damn near at all. I was diagnosed with vertigo for the first 2 months until I went to the MAYO clinic in Rochester MN. Thank God I made the trip (and still am). I was put on Acetazomide (water pill) and within a month my vision, hearing and pain problems were 99% gone. They said my optic nerve was swolen creating too much pressure everywhere.
I had plasma exchange and am currently having the treatment called IVIG. And for the first time in 4 months I am starting to walk on my own. Doctors say Ebsteen Bar Virus made all of this. I don't agree. In March I was in Basic Training and received many immunizations which research has indicated might be the answer. Im starting to think the military was a bad idea for me.
Has anyone received this "disease" from immunizations?
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Re: Recent ADEM victim with hearing symptoms.

Postby Shirley » Sun Jan 03, 2010 2:25 pm

Hello Nik,
I wouldn't say that the immunizations caused the ADEM but maybe contributed along with the EBV. Our immune systems become confused and overactive trying to protect us, in the end, some of us keel over with TM, ADEM or some other related disorder.

Take Care Nik

Cheers
Keep well



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Re: Recent ADEM victim with hearing symptoms.

Postby wilky50 » Mon Jan 04, 2010 1:15 am

Hi,
In September last year I had a Tetanus and Hep A jab on the same day, about two weeks later my bladder packed up and i went to hospital with a suspected bladder infection.
Two weeks after that I lost all feelings from my belly button down and the use of my legs.
After Steroids for 3 days I was able to stand again and eventuallt walk with a zimmer frame.
Three months later I am able to walk without crutches but only short distances.
My bladder started again and has slowly started getting back to near normal, my bowel has got slightly better and the tingling is slowly disappearing.
Until I joined this website I had no idea how this condition affects people and the damage it can cause!
Every doctor I saw said I should make a full recovery, they were very relucant to tell me about ADEM and said I can look it up on a website when I get out of hospital.
I was also not told what to expect, the back pain in my spine is sometimes unbearable and I had to go back to my GP for pain killers.
Stamina seems to be lacking at the moment and my hips are very stiff, I am very upbeat about it all, but would have felt better if I was fore warned on what to expect pain wise.
In England there is very little information about this condition and I think it needs a bit of press in this country!
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Re: Recent ADEM victim with hearing symptoms.

Postby kanzaldi » Tue Mar 30, 2010 5:50 am

I also had both flu shots, the seasonal flu shot and the H1N1 flu shot. My neurologist said no more flu shots ever!!! Also to address the ringing in the ears and sensitivity to noises. I had both and it seemed to last for about a month and then has slowly gotten better. I had horrible pain in the neck and back also and had to be put on pain mads. I don't take them hourly or even daily anymore. This experience has left me with alot of questions that do not seem to be answered. I do seem to be feeling better each day. Is anyone else wiyh ADEM tired all the time?
Kristen
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Re: Recent ADEM victim with hearing symptoms.

Postby OnGodspath » Thu Jun 14, 2018 10:54 am

kanzaldi wrote:I also had both flu shots, the seasonal flu shot and the H1N1 flu shot. My neurologist said no more flu shots ever!!! Also to address the ringing in the ears and sensitivity to noises. I had both and it seemed to last for about a month and then has slowly gotten better. I had horrible pain in the neck and back also and had to be put on pain mads. I don't take them hourly or even daily anymore. This experience has left me with alot of questions that do not seem to be answered. I do seem to be feeling better each day. Is anyone else wiyh ADEM tired all the time?
Kristen

Greetings Kristen,
I'm not sure what ADEM is, but I have Transverse Myelitis, and Yes! tired alot. I have battled with fatigue for years. My stamina can last for about 2 hours max. I need to take all activities in small parts, with rests in between.
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