Acute Disseminated Encephalomyelitis (ADEM) Support Group

Please help me- I need hope and encouragment


#41

Thanks all! I’ve been responding to others posts and hopefully offering advice support and advice- just neglected my own post :slight_smile: this is an amazing community.


#42

I have found that finding this group when I was sick, was a great help; just talking and learning about what others had experienced. I try to pass that same experience on (which has also helped me). I've learned more about ADEM from everyone here than the doctors I dealt with. I will always feel that everyone on the site was a part of my recovery! I promise I will continue to help where I am able.


#43

Good Luck, I hope that the exchange will help. You are in my prayers!


#44

Blerta, how are things now? Drop by and let us know:we are thinking of you.


#45

How is your husband doing now? Let Go And Let God


#46

Hi there!
He is doing much better and is back to work. Thankfully for us, the side
effects are emotional variances- bouts of anger, frustration etc. But we
are thankful and chugging along. Unfortunately, I have a new job and have
been working extended hours, and with a 3 year old, it doesn’t leave us
much time to do much but work and sleep.

Thanks for checking in!

Blerta


#47

That is wonderful news! You are still in my prayers. Keep putting one foot in front of the other!!! Lynn


#48

Wonderful news, Blerta. Do drop by from time to time: we’d love to hear how things are going. There are many people here who appreciate your words of encouragement and hope.
Seenie


#49

Thanks for the update and great news. I am so happy for you and your family. Praying for continued improvement. Gives me so much hope as my son is still in recovery. All my love and all the best to the family.


#50

Hello, this sounds like my daughter, she has been here since July 1st 2016, she coded Saturday the 3rd of Sept, she is now in ICU and just started plasmapherisis, Her heart rate is now stable, I keep praying she will come back to us we need encouragement. very scare my daughter Danielle is only 24 years old with 3 young kids.


#51

So sorry to hear this! Please stay strong. My husband is back to work and aside from minor side effects is doing extremely well! There is recovery and I’m hopeful everything will be ok for you and her. Plasmapheresis helped my husband tremendously. This is such a scary time but know that recovery is entirely possible. I will say a prayer for you.

Blerta Spiro


#52

How long did it take after doing the plasmapherisis, did you notice he was getting better?


#53

I would love to talk to you, my daughter is the one with ADEM, such a mystery of a diesease


#54

My husband started showing improvements after the third plasma exchange
treatment. I wrote yesterday about how he is mostly recovered and minor
side effects, but every day is a new challenge.

Finding that he is now having fits of anger/rage that are completely
unwarranted and really over little things. I had forgotten about them
entirely, but was sorely reminded last night. Anyone else experience the
same? This will be the third episode since his diagnosis/illness.


#55

Sounds scarey, does he get physical and if so is there any kind of medication to help with the fits of anger and rage? I am also concerned on the mylin, how long does it take the mylin to repare itself


#56

Myelin repair is very slow if it does repair.


#57

Blerta,

My first guess would be for major frustration. Can you talk to him about the outburst when he’s calm? If you ask why it happened, could he tell you? I remember (and occasionally still have those moments myself) when I can’t seem to get something right. Pure Frustration…


#58

So is there a chance it wont repair itself, is there anything one can do to help this process


#59

This might help explain. http://www.nationalmssociety.org/Research/Research-We-Fund/Restoring-What-s-Been-Lost/Repairing-Damaged-Tissues#section-0


#60

The myelin does repair but not the the way it was orginally but it does repair. Research shows that exercise helps repair the myelin as well. The body heals itself but the myelin just takes a long time to repair itself. It repairs faster in children when compared to adults. Based on information from our neurologist recovery is also aided my getting patients to read as much as possible. He has also approved us using biotin supplements as research has shown it to be beneficial for MS patients. Vitamin D supplements has also been recommend because research indicates that individuals with low vitamin D levels are more likely to get ADEM. But please check with your doctor. Blerta my son has bouts of anger he is on depression medication and I notice he is more angry in the morning just before he receives his new dose. We would not cope without the medication although we would love to. His frustration stems from him not being able to communicate effectively. Our neurologist believes he understands more that he can communicate. He set up his own i phone this weekend with passwords and fingerprinting but struggle to write complete sentences. He knows the periodic table very well including the Atomic number of the elements.The frustrations comes from his understanding what is going on with him, struggling to communicate, being more aware but not able to do what he was able to before the ADEM attack. He normally gives me an apology but still answers “I do not know,” when I try to ascertain what has upset him . I hope this will improve with time with my son and your husband.