Acute Disseminated Encephalomyelitis (ADEM) Support Group

Recurrent ADEM


#1

Does anyone have experience with recurrent adem? I have a friend who has been dealing with a possible ADEM diagnosis for nearly a year. It has gone back and forth from ADEM at initial diagnosis, then to MS, and now the doctors are back to leaning towards an ADEM diagnosis due to the severity of the attacks and the responsiveness to steroids/plasmapheresis. It seems like when she has a treatment, such as steroids or plasmapheresis, it will get better for awhile, and then the symptoms begin returning.

What ultimately determines whether or not an individual has ADEM or MS? I explained my perception that ADEM tends to be more of a monophasic event and then go away, and the doctor said usually this is the case, but it can also be recurrent. But even the recurrent episodes I have read about don’t seem to be scenarios where the symptoms start returning so shortly after treatment (within a few months).

I appreciate any experiences that anyone can share. Thanks.


#2

I can share from my experience that I had 2 ADEM attacks with 1-2 months difference. And I was told that this was rare. Never heard of such a long attrack. But it’s such a rare and in-investigated desease that I will not be surprised.
Hope that helped a bit.


#3

My son aged 32 was diagnosed in April 2015 with ADEM. Because of the severity of his attack. Our neurologist who is very knowledgable about ADEM and MS has treated his ADEM with Chemotherapy after steroids/plasmapheresis treatment did not stop the lesions from being active.Hopefully this September will be his last chemo treatment. The reason for the chemo treatments after December 2015 attack was to prevent a relapse. According to our neurologist you can get another attack and because of the severity of his attack they decided the chemo treatments will prevent future attacks. They normally do a blood test and check his white blood cell count before they make the decision to do chemotherapy. Recurrent ADEM is possible but I also know it is considered monophasic. We had 3 rounds of cytosine during the first year and then it was changed to Rituximab,. Then from January 2016 we did the chemo ever six months to prevent another attack. We are fortunate that he did not have another attack. He has not recovered fully but is improving very slowly.


#4

In my case, a Nurse suggested that I get checked for Viral, Non-Rashing Shingles since ADEM can be a post viral infection. I have been dealing with symptoms very similar to MS since 2009, so I asked my Primary Physician if he could do a blood test for the Shingles virus. He did. My test came back very high and active. He explained to me it was unusual, but it can happen. Since ADEM has been known to come on after a Virus, this very well could be the cause of my symptoms all these years.


#5

Learning more. Non-Rashing Shingles IS the virus I have. Along with this Virus comes Facial
(Bell’s) Palsy and Frozen Shoulder. Rather than guessing what medication to give me to heal this virus after so many years, , my Doctor suggested a major diet change. I agreed. His suggested help has been amazing. After a few Months, I can feel the difference.


#6

Hi Sarah. I am also 32 and was diagnosed with ADEM in June 2018 after my symptoms began in late March. We think it was caused by either a virus or bad bacteria from raw fish. How is your son now? What were his initial symptoms? And was he left with a permanent disability? Because mine was diagnosed so late after the initial attack, I was not given any steroids, etc. and I have been trying to heal naturally through diet, supplements and acupuncture, and took a couple weeks of medical leave from work. However I’m still experiencing a few symptoms and I worry I will have a relapse if I get a cold/flu or overly stressed. I appreciate any tips/insight you can give. Thanks!


#7

I wish I could say my son is doing well but he is not. He is still recovering extremely slow. He does not have an attention span can only read a word or a phrase at a time, has short term memory problems, gets very angry. It has been quite a challenge. We finally went to the AMEN clinics to have him evaluated. They changed his meds did extensive testing and found that he has the herpes simplex virus, tested positive for mold toxicity and the epstein barr virus. We still have to do a test for lyme disease and neurotoxins.He had some complications when they did a biopsy on his brain. The neuro surgeon left a hole in his brain did not close the duraflap and as a result his brain was herniating, fluid was collecting in the brain for about a month before they discovered it and they therefore had to do a craniotomy . The AMEN clinics found that that part of the brain where the surgery was done showed the most damage with very low blood flow. There is such a disconnect he can do algebra - solving for x. Can do addition, multiplication division and subtraction. He was an organic chemistry major so he has been teaching me so much about chemistry. But cannot solve simple problems. He does not want to stay at home and constantly leaves the house in anger multiple times. Yesterday however he was able to find his way home twice. This was quite a milestone but it difficult taking care of him. He has been on most psyh meds on the market but nothing seems to work. He just started to talk recently, he is verbal but not conversational. The AMEN clinics suggested that we should not do chemo because it does affect the brain’s ability to heal. Do some research on “chemo brain.” We found that just when he starts to talk they do chemo and then he stops talking. So I requested we not do the chemo this time. The neurologist said the chemo works similar to a vaccine. He cannot say for certain that my son will get an attack. It is just preventative. But he did do an antibody blood test and said the chemo was in fact not necessary. I do not understand why they just blindly wanted to do chemo without doing the blood test first. I know the Wahls Protocol discusses a diet for demyelation. From the broken brain series by Dr. Mark Hymen they talk about using tumeric, wild blueberry juice, fish oil, etc. to heal the brain. It is hard to implement supplements because my son struggles to take his meds and many time he will vomit them up consciously. He does not understand that he needs the medicine, supplements or food to heal. My husband follows more what traditional doctors say and it has been quite a challenge to implement what the AMEN clinics recommended which is Hyperbaric oxygen to help the brain heal where there is damage, NAD intravenously and Vitamin C infusions. They also have special supplements for the brain. My husband refuses to try the HBOT although their is anecdotal research to support it. You can research this yourself. My son does continue to recover just very slowly. He is remembering work friends name, middle school friends names, university friends names, is recognizing film star names, movie names etc. His long term memory seems to be better than short term but short term is improving. I do not think the continued use of chemo was a wise choice initially it was used to stop the growth of the lesions and it helped but I personally think that long term used has caused more harm then good. We do not know how far he will recover but initially he was unable to walk, talk, did not know who we were. We have come a long way but have a much longer journey ahead. We do not know if he ever will be able to take care of himself. He just remains angry with me and his dad and is ok with everyone else. His anger is the most challenging to us and him leaving home constantly to go on walks. We may have to admit him to a rehab facility for some time out. I wish I could take care of him but he does not want to allow us. He has become a danger to us and to himself and I have no idea to what extent he will recover. To me it sounds like you are doing well and the brain continues to heal. Check out Joe Dispenza on u tube. He has very interesting ideas about healing. For the last 3 years all i have done is research and read as much as I can to help my son. I wish I knew what is going on in his brain but he appears to be very tortured. God bless and take care.Praying for continued healing for everyone.


#8

I would also like to add in hindsight that the psych meds he was on was prescribed by his neurologist which in fact hindered his recovery. If you decide that these meds are needed they need to be prescribed by a psychiatrist. They try and prescribe meds that will do as little damage as possible to the brain. Neurologist do not have this Knowledge based on my experience with my son. Take care and God bless.


#9

On a spiritual level focus instead of having a healthy body with an healthy, amazing, vibrant, intelligent brain. Visualize this every day. I also do meditate and pray with my son. You can do an anti body blood test it will tell you if there is cause for concern. Eat plenty of anti inflammatory foods.