Acute Disseminated Encephalomyelitis (ADEM) Support Group

Is there RECOVERY?


#1

I suppose the question we just don't seem to have any kind of answer to is,,,,Is there recovery once you have the lesions in your brain and All the Dr. will say is "it takes a long time for the brain to Heal". Does this mean that the damage that is there is permanent and will not be going away, That he has to learn to live with what he has been dealt. Or after time passes, he will begain to recover. I know his fatigue level is growing more each day. Forgetting everything and expecting me to remember everything and getting agitated at me for not having an immediate response or answer. Not only me but his adult children also. Not understanding our frustration over his behavior. Sometimes recognizes it some times not. Has been extremely emotional, crying for a week now off and on. Life continues on the roller coaster. Looked back at a picture of us right before this happened 2 years ago..WHat a difference!

He looked like a different man.


#2

My neurologist told me 6.5 years ago that it takes between 2 and 10 years for the damage to repair. I find I still am regaining lost bits of function. I've shared my story before, but just let me encourage you to ask to have a blood test for gluten antibodies. I am convinced my ADEM was a direct result of undiagnosed Celiac disease. My ataxia ended when I stopped eating gluten after the diagnosis of true Celiacs disease. If I accidentally eat contaminated food, the old ADEM symptoms reappear. Never a believer in fad diets, but this was medically diagnosed by blood test and biopsy. I NEVER cheat on my diet to the point of going out to eat with friends and having a glass of water if I think the staff is not well trained to avoid touching the bread then touching my food. This article explains some of the links and may be helpful. Again not on a fad, but out of medical necessity. (http://www.glutenfreeandmore.com/issues/4_12/ataxia-2366-1.html)


#3

Thank you for that advice. I will definitely look into that test for him. It was all so very strange how this all came on so suddenly 2 years ago, no notice, no problems, we had just been bragging to our friends 2 weeks prior about how blessed we were and out of nowhere...everything started. Thank you for sharing with me.


#4

I was totally unaware that Celiac disease could cause you to have lesions and or tangles in your brain. Or ADEM like symptoms. I have several friends that have that and it has never been brought up to us at all. This is something I will definitely follow up on.


#5

Gluten ataxia is a recognized form of ataxia. However, it is unrelated to ADEM. Celiac disease may present with ADEM-like symptoms, but it too is unrelated to ADEM. From Sweetknits' description, it sounds like either Gluten Ataxia or Celiac Disease could be responsible for ADEM-like symptoms in her case, and it is useful to have your story here, Sweetknits, in case someone else arrives in a similar situation. However, it would be a mistake to think that everyone here will improve if they cut out gluten, as gluten intake is not known to have any impact on true ADEM. I hope that clears up any potential confusion.


#6

Our doctor also told us 2 to 5 yrs. My son had and still has very low iron. Have a blood test done for that. As soon as we started giving my son iron supplements, he perked right up.


#7

Gluten intolerance is an autoimmune disorder. The body becomes sensitized to the protein and creates antibodies which attack and destroy certain body tissues thinking those tissues are also the invading alien gluten - in Celiac's disease it is the lining of the digestive track. In Dermatitis herpetiformis, it is tissues in the skin. In Gluten ataxia it is certain proteins in the brain. People with gluten intolerance may also experience dental enamel defects to permanent teeth, which is another manifestation of celiac disease. Less than 20 percent of people with Dermatitis herpetiformis have symptoms of digestive celiac disease. One study in the UK found a high number of people with ataxia from unknown cause had high gluten antibody counts. ADEM is an autoimmune disorder where the body for an as-yet-unknown reason creates antibodies which destroy the myelin sheath of the nerves. My case of ADEM was diagnosed in 2009. Gluten intolerance in 2011. I too was having problems with low iron. When several rounds of iron infusions were not having any effect, my doctor ordered, unbeknownst to me, the antibody test for gluten intolerance in conjunction with a regular blood count. Normal is under 2. Mine was over 8. Retesting after accidental gluten consumption and an experimental repeat MRI have shown renewed inflammatory activity in the same areas of the central nervous system as my original ADEM episode. In my case - anecdotal evidence only - it appears the ADEM was triggered by my extreme sensitivity to gluten. Not saying the two are always related, but both my endocrinologist and neurologist feel that one led to the other for me. Since it is a simple blood test, it is well worth just doing. Again, anecdotal evidence is not cause and effect. ADEM is still a big mystery as are most neurologic disorders


#8

Lotus,

If your husband's kids need answers, they too can sign onto our site, do research and ask questions. To be honest, considering the doctors know soooooo little, I think we all help each other more than they do. If his emotional issues are such an issue, maybe asking his doctor about the Pseudo Bulbar, would be an idea. http://www.pbainfo.org/science. If you can get his emotions in control, maybe that would help his overall healing.

Lynn


#9

Thank you Mary 16, we have already covered that base!!

Mary16 said:

Our doctor also told us 2 to 5 yrs. My son had and still has very low iron. Have a blood test done for that. As soon as we started giving my son iron supplements, he perked right up.


#10

Thank you Lynn. I truly appreciate your insight. I will mention it to his children. It would be great to get his emotions under control.

Lynn said:

Lotus,

If your husband's kids need answers, they too can sign onto our site, do research and ask questions. To be honest, considering the doctors know soooooo little, I think we all help each other more than they do. If his emotional issues are such an issue, maybe asking his doctor about the Pseudo Bulbar, would be an idea. http://www.pbainfo.org/science. If you can get his emotions in control, maybe that would help his overall healing.

Lynn


#11

> Is there recovery once you have the lesions in your brain and All the Dr. will say
> is "it takes a long time for the brain to Heal".

It must be really frustrating for you when the doctors only answer with vauge,
general answers.

> Does this mean that the damage that is there is permanent and will not be going
> away, That he has to learn to live with what he has been dealt. Or after time
> passes, he will begain to recover.

Neuroplasticity says that he is likely to recover.

> I know his fatigue level is growing more each day. Forgetting everything and
> expecting me to remember everything and getting agitated at me for not having an
> immediate response or answer.

You are both in an amazingly difficult situation. He doesn't understand what to
ask you because he doesn't understand what is the nature of what is happening
right now. Neither do you. So you are both feeling your way and it is painful
and challenging and confusing for both for you.

> Sometimes recognizes it some times not.

I watch that "flooding" video that was posted recently, every day. My wife
watches it as many times as she can stand it. I think it is harder for her to
see me like this.

> Has been extremely emotional, crying for a week now off and on. Life continues on
> the roller coaster. Looked back at a picture of us right before this happened 2
> years ago..WHat a difference!

For some of us there is no escape from the insane highs and lows. It is
extremely frustrating. I am sorry for you, just keep at it. Get a support
network. Maintain personal friends. Make sure you have "you" time where you
invest in yourself. Investing in the survivor can feel like investing in a black
hole sometimes; you can never fill the void that they want to fill. Just know
that you are not alone here. You are unique, and other people are facing this.
Don't do it alone. Kudos to you for reaching out.


#12

I had my Adem experience close to two years ago.

Fact is that I have always felt dizziness ever since, sometimes more sometimes less. I always run out of patience and I blow my top very easily. My wife does not understand it and this often gives rise to domestic fighting. To avoid this I spend most of my time at work. I know I am intolerable soometimes but being the bread winner of the household I do expect some respect and compassion. So to defuse the situation I opt for the way out... I became very emotional but sometimes I go wild especially when something bothers me, name it a dog or a cat...

How long it lasts only God knows....Some say 2 years, others 6 others 10. I dont bother asking anymore. If it is to go some day it will go by itself. Even my monthly visit to my neuro became a routine: Every 6 months an mri and monthly blood tests and the usual question: Something new? No mam, ok see you next month...

Some suggest diets, others medication. Dont really know whom to believe so I believe nobody! I drink a lot of coffee and this makes me feel good. This is my remedy but I am not sure at all whether it s going to work on others so dont bank on it please. I am also on a limited fat iand no saturated oil intake.

Bottom line Adem is a hard thing and we have to live with it. Why us? We happened to be the chosen ones for reasons nobody can explain yet.


#13

I use caffeine, 1 part black tea and 2 parts cow milk with a good portion of sugar, to get through the day. It is the only thing helps. I stop at 2:30.

papageo said:

I had my Adem experience close to two years ago.

Fact is that I have always felt dizziness ever since, sometimes more sometimes less. I always run out of patience and I blow my top very easily. My wife does not understand it and this often gives rise to domestic fighting. To avoid this I spend most of my time at work. I know I am intolerable soometimes but being the bread winner of the household I do expect some respect and compassion. So to defuse the situation I opt for the way out... I became very emotional but sometimes I go wild especially when something bothers me, name it a dog or a cat...

How long it lasts only God knows....Some say 2 years, others 6 others 10. I dont bother asking anymore. If it is to go some day it will go by itself. Even my monthly visit to my neuro became a routine: Every 6 months an mri and monthly blood tests and the usual question: Something new? No mam, ok see you next month...

Some suggest diets, others medication. Dont really know whom to believe so I believe nobody! I drink a lot of coffee and this makes me feel good. This is my remedy but I am not sure at all whether it s going to work on others so dont bank on it please. I am also on a limited fat iand no saturated oil intake.

Bottom line Adem is a hard thing and we have to live with it. Why us? We happened to be the chosen ones for reasons nobody can explain yet.


#14

I must be drinking 5 espressos from 6 am until 13hrs and then another one around 17 hrs to start the evening of a split shift. Black no sugar. Makes me feel good!!!


#15

I know what you mean, it lets me "think straight" and feel good for once, too!

The stock price of Pepsico went down when I switched from Pepsi to black tea.

I do sugar, too. Something has to feed our brain!


papageo said:

I must be drinking 5 espressos from 6 am until 13hrs and then another one around 17 hrs to start the evening of a split shift. Black no sugar. Makes me feel good!!!


#16

I Appreciate your thoughts. I guess that is what I am doing is reaching out. I think I have outreached all my close familiy and friends and I find it is relieving to be able to talk about it here. Everything you said is so true. I appreciate the encouragement and knowing that we are not alone. I try to get "me" time when I can. I still work full time so that helps. I know there are alot of people out there coping with all that comes with ADEM. I think insecurity and obsessive behavior have been magnified in him. So even at work.....me time isn't always a way to have time to myself. Anyway,,,,thank you for sharing and caring...life goes on ...Have a great weekend!

Occipital said:

> Is there recovery once you have the lesions in your brain and All the Dr. will say
> is "it takes a long time for the brain to Heal".

It must be really frustrating for you when the doctors only answer with vauge,
general answers.

> Does this mean that the damage that is there is permanent and will not be going
> away, That he has to learn to live with what he has been dealt. Or after time
> passes, he will begain to recover.

Neuroplasticity says that he is likely to recover.

> I know his fatigue level is growing more each day. Forgetting everything and
> expecting me to remember everything and getting agitated at me for not having an
> immediate response or answer.

You are both in an amazingly difficult situation. He doesn't understand what to
ask you because he doesn't understand what is the nature of what is happening
right now. Neither do you. So you are both feeling your way and it is painful
and challenging and confusing for both for you.

> Sometimes recognizes it some times not.

I watch that "flooding" video that was posted recently, every day. My wife
watches it as many times as she can stand it. I think it is harder for her to
see me like this.

> Has been extremely emotional, crying for a week now off and on. Life continues on
> the roller coaster. Looked back at a picture of us right before this happened 2
> years ago..WHat a difference!

For some of us there is no escape from the insane highs and lows. It is
extremely frustrating. I am sorry for you, just keep at it. Get a support
network. Maintain personal friends. Make sure you have "you" time where you
invest in yourself. Investing in the survivor can feel like investing in a black
hole sometimes; you can never fill the void that they want to fill. Just know
that you are not alone here. You are unique, and other people are facing this.
Don't do it alone. Kudos to you for reaching out.


#17

Problem is, as correctly mentioned, that no one but you can understand yourself. I often go home wondering why I am going home for. I guess if it wasnt for our 3 year old boy I would find an excuse to stay at work throughout the day....This gives me the opportunity to be on my own, something that keeps me cool. I have a lot of strength and self confidence and the only thing I can not stand is someone questioning my every movement. It drives me nuts when this happens at home. I often forget things and the worse is when I am being questioned about things I forgot and the reason I forgot them. Living with a person who had an ADEM attack must be hard but at the end of the day a decision must be made: Can you take it or not? If not then you better leave it... Regretfully we are on our own. Others, no matter how close or far eventually get tired of listening to you. Only you can keep on listening to yourslef cause only you can understand the mangintude of the problem and its many complications and variations. Personally I got tired of telling others my story as much as others must have got tired listening to mine!!!!


#18

Do you have to tell your story often? Those that know me well, already know my ADEM story and those that don't, I don't worry about. You can only do the best you can and as long as you can accept that, that is all that's important. Does your wife question everything because she's worried about you and is your post-ADEM personality much different?

Lynn


#19

Definetely my post ADEM personality is different. And all I want is to be left alone and in peace without anyone questioning my whereabouts and my every move, especially when I am dizzy. Once people understand this we shall live in perfect harmony! I dont bother anyone, I keep quiet and in silence and I can not stand it when others bother me. It is not fair.... Once others understand that I am not who I used to be then things will settle. But by trying to push me do things I used to do before in the hope that they will rehabilitate me, brings exactly the opposite results.

My story I dont tell it often, very very rarely. I used to talk about it at the begining but not any more.


#20

I am sorry you seem like you are so distressed. Any time you want to talk...we're here.