Diagnosed in the 1990s, looking for recommendations

Hello and Happy New Year to everyone in our community,

Our newest member (and the first member of the year 2022) is @James72 , and he is really curious about his father’s ADEM, and possible treatment options. His father was diagnosed in the early 1990’s, and as he has developed various symptoms such as loss of balance and speech, he would like to know if there are any treatments out there to help reverse or manage these symptoms.

I am pasting his story here, because he said it best:

> " My father was diagnosed with ADEM in the early 1990’s. It had a profound impact on his life and he is still dealing with symptoms to this day. Because this disease is so rare and it’s onset was so long ago, I notice most of his physicians now have no idea what ADEM is or how it may be impacting him. I recently started reading about ADEM again to refamiliarize myself with it and see if there have been any advancements. I am reading that many cases are temporary, treatable, curable. I don’t think any of this was true or at least I didn’t know about it when my father was first diagnosed. It makes me wonder if after all these years, could he benefit from the steroid treatments recommended or any of the other treatments? He has since the onset suffered from issues with balance and coordination, speech, cognition, and dysphagia. I am curious if any of this could be reversible? I was very surprised to read that most cases of ADEMS are treatable and that people recover from it. This was not the experience of my family. If anyone has any treatment recomendations for someone who has been dealing with the symptoms of ADEMS for nearly 30 years, I would love to hear them".

If anyone has any recommendations, or would simply like to provide support and share their story, that could go a long way.

Welcome to our community James, and I hope we are able to help you in your journey. Your father is lucky to have you, and we wish you both the very best and hope to hear about any updates!

Regards,
Arjuna — Lead Intern

copy to @trust_level_0

My son was diagnosed with ADEM in April 2015 . It was quite severe. We have been dealing with our son now aged 38 now for 7 years. He is not functional needs 24 hour supervision. He has Aphasia but somehow in the last 3 months we have seen a huge improvements in his speech. We do now realize that his long term memory is exceptionally good but he has severe attention attention deficit issues and short term memory issues. One doctor explained that all the information is there but because of the myelin damage it is like a computer with all the information in tact but an inability to retrieve the information. We have seen an improvement in his speech and we think it may be related to the following: we have stopped hall antipsychotics, anti depressants and sleep medication. ( The side effects were horrendous. We had severe aggression issues and Akathisia. ( walking the streets at 2 am in the morning, constantly unpacking cupboards etc. The psychiatrists prescribed antidepressants, antipsychotics and sleep medication which turned our lives into hell due to the side effects. He was physically aggressive, caused damage to property and was verbally abusive. He suffered kidney damage, heart damage, liver damage and further brain damage from the high doses of medications that did not work and went into renal failure. Last year around May after the lithium poisoning and haldol combination of medication he was left in a catatonic state, and dehydrated. He was in the hospital for around 6 weeks and came home in diapers. He stopped using diapers around 2016 but he regressed tremendously after the poisoning caused by the prescription medication. We also started using Lions Mane mushroom to help with his mood and myelin repair and we are using medical marijuana for the aggression which has been a game changer for the aggression. The whole plant is the most beneficial based on my research and it must have the calming terpenes Linalool, Mycerne ( helps with sleep as well) Terpinolene and Caryophyllene. The dominant terpenes must be these listed. We stay away from uplifting terpenes like Pinene and Limonene as they cause aggression in aggressive people. We are also using supplements like Vitamin B6, Sam-e , 5htp, Ashwaghanda, vitamin B complex and Neuromag. We have seen the biggest improvement in the last 3 months. We attribute it to stopping anti psychotic, anti depression and sleep medication that actually causes further damage to the brain based on my research , starting the medical marijuana and Lion’s Mane mushroom. He is still on an anti seizure medication Trileptal that we are slowly weaning him off due to high weigh gain and insomnia. It was initially prescribed to treat aggression but it did not really work as the aggression did not abate. He is still on two blood pressure medication we feel helps keep him calm Guanfacine and Propranolol. We eventually want to move to a place where the marijuana laws are not as restrictive so we can just use the whole plant which is more beneficial. We just have access to oils and gummies in our state.I may add everyone is different but this has been our personal journey with our son. I am in awe of his improvement in speech because years of speech therapy did not produce these results. My wish is that everyone continuously heal. My son heals all the time just very slowly. We remain hopeful and we are grateful for the healing that has taken place.

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Hi Sarah, good to hear from you again, and it’s nice to get an update! @James72 will appreciate your input, I’m sure.

Seenie from ModSupport

My husband was diagnosed with ADEM in 2013. He has not improved as we were told he would, and he has since been re-diagnosed with MS. The kicker for me is that doctors don’t seem confident about either diagnosis. They know it is one or the other. I’m left watching him get weaker, and he recently hospitalized with aspiration pneumonia.
The results are the same whether MS or ADEM as far as what it has done to him. You could ask a neurologist if there is anything that could help, but the steroids are aimed at reducing inflammation. If he doesn’t have active lesions it probably won’t help. I’m sorry your dad has had to deal with this for so long. I wish doctors would re-educate themselves on ADEM, because I have yet to see evidence that it resolves itself.

Unfortunately, very little will happen until a lot more people show up at hospitals with our condition. And then only maybe.

Agree, Lynn. But when a lot more people show up, it won’t be rare any more! Cold comfort, I know, but this is a story that we hear from many members in our rare disease communities.

I think one of the answers to diagnosing rare diseases and conditions is going to be the use of diagnostic algorithms. Don’t be too impressed, I’m not that smart … google says:

Diagnostic algorithms are step-by-step methods for making a diagnosis using a combination of symptoms, signs, or test results . Diagnostic algorithms can be used to come up with possible diagnoses in order of their likelihood.

When I look at my own diagnosis “adventure”, a computer program that asked the right questions could have done in minutes what took a human a decade to achieve. All the right boxes would have been ticked, if only the human had know which boxes to look at!

Being a rare disease patient isn’t easy.

Seenie


It’s not easy being rare.

When I got sick, my husband started HIS researching. By the time he was done, we knew more than the doctors who were trying to treat me. Victor has always said ADEM is diagnosed by ruling out the other diseases, like MS, which several doctors tried to convince me I had. Oh well, all we can do is keep fighting for ourselves and all other patients and caregivers!

I LOVE KERMIT!!! Green is my favorite color, by the way.

You’re so right, Lynn, about researching. As a rare patient, one of the things you need to do for yourself is learn as much as you can about your condition. You are not trying to be your own doctor, but the more you are able to understand about your disease, the easier it becomes to live with it. Not that having a rare disease is ever easy.

I love Kermit too! “It’s not easy being rare” came to mind and I hesitated for a moment about adding Kermit. Being silly every now and again is good for the spirit, don’t you think?

S

Absolutely!!! A sense of humor can help get through a lot of uck situations.

Hi @James72 -

I don’t believe that everyone recovers 100% from ADEM. I think kids might have an advantage because their brains are still growing, but even their recoveries seem far from “perfect” or “back to normal.”

I have had to become my own VERY LOUD advocate! I found a great neurologist who knew nothing about ADEM until he met me, but we’re learning together. (The first quack assured me it was just Sleep Apnea, if you can believe that!)

I would suggest talking to his neurologist about specific challenges. I was dropping things, tipping over, couldn’t go to the bathroom, etc. Each of this individual “skills” was eventually addressed by a different physical therapist. My neuro probably knows more about my private challenges than my primary!

If his doctor isn’t responsive or helpful, find a new one. They don’t have to know about ADEM, but they have to be willing to work with you/him to adapt and hopefully conquer the challenges.

Best to you both, Laura

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Hey Laura,

Absolutely, I believe it. Some medicos have the idea they know it all, the reality is nobody knows it all, especially when it comes to neuro. They’re still learning things about the brain, so the know-it-all attitude is more ego than reality.
I completely agree that we must become our own advocates. After years of dealing with (or trying to deal with) the neuro’s attitude, I too have become a strong self advocate. You were told sleep apnea, I think my oddest diagnosis was ‘idiopathic in nature’ in other words ‘There is no cause’, it’s all imaginary . Well, don’t I wish, then I’d be able to imagine it all away.

I would ALWAYS recommend a 2nd opinion, especially for rare conditions. The simplest answer is not always the correct diagnosis.

Merl from the Modsupport Team

Hi my daughter was diagnosed with ADAM in April 2016 she had just turned 8 she is now disable with a ABI she now has behavioral issues and has not returned back to school I’m struggling to find a doctor that can help me understand better what the damage is

Hey Helen,
My name is Merl. I’m a member of the modsupport team here on Ben’s and I’m in Adelaide.

ADEM is considered to be a rare condition but there is some strong correlation between ADEM and M.S.
I’m unable to say whether the M.S Society in Victoria would be able to assist but if not, they may be able to direct you to a specific service that may better meets your needs. Some services can be age specific, some can be region specific but there will be a service somewhere that can assist.
Here’s a link MS | Helping Australians to live well with multiple sclerosis

Finding a specialist with specific experience? That can be a real issue. Some neurologists can have the attitude that they know all about the brain, but for specific experience with ADEM, that could be difficult to find. There are a few specific neurology clinics in Melbourne, with multiple specialisations but as to who would have the knowledge/ experience for ADEM, I’m unsure. You could contact them to discuss your concerns, but as for who is good or bad, that really can be a flip of a coin. My condition is neurological and every dr I’ve seen has had differing opinions. I couldn’t say who’s best.

But again, I think the M.S. Society would be the best place to start and please do let us know how it goes. The information may be helpful to others.

Merl from the Modsupport Team

Helenpp, Seenie here. I work with Merl and another person, Sharon, on ModSupport. Merl’s suggestion about contacting the MS society is a good one. Something else you might want to do is start your own post for suggestions from other members in Australia:

  1. Click on the butterfly, upper left to go to Home Page
  2. Click on the big blue “+” circle, bottom right
  3. Give your post a subject line with “Australia” in it to catch other Aussies’ attention and explain your situation.

I’m pretty sure someone in Aus will have suggestions for you. Merl and I can help if making your own post doesn’t get the information you need fairly quickly.

Along the way, please feel free to message Modsupport (Merl, Sharon or me) or Moderator Lynn by clicking on “About/Contact” and then on one of the avatars there.

We’ll help you get the help you need! Good luck with this.

Seenie

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Hi, I have rarely been on here but lately felt the need to see if im not the only one going through what i am today and looks like im not. I was diagnosed in early 2003 I was 7 yrs old at the time. I dont remember much but what i do know is i was completely paralyzed from the chest down. Doctors turned me away and still do to this day as i still suffer from complications or new symptoms. The day I was diagnosed was because my parents took me to the ER and later found out my lungs were shutting down. I spent most of my time so drugged that i was asleep most of the time so im sorry i cant remember much from back then. What i can tell you is what is going on today. I finally am putting my foot down and fighting for answers doctors seem reluctant to give. I have developed severe depression, anxiety, and mood issues. I suffer from lower back pain due to my tailbone crushing into my spine and degenerative disc. I have memory and speech, thinking/understanding issues that affect my daily life and work. And many more symptoms.I am currently seeking a doctor for any kind of answers whether it be ADEM related or possible MS and my doctor when i was younger told us to keep an eye on worsening syptoms that would lead them to believe i developed MS. Hopefully all ends up being the same disease and nothing new.

I hope you find out something for your dad. I understand the struggle. Im 26 now and feel like my life will never be normal again. Like ill never be able to do what people my age do because im always in pain or worried about sounding stupid. Maybe ill finally have answers and i promise to share if i do. Good luck!

24lollies,

I’m Lynn and I am so sorry, you’re having to deal with all this. I was diagnosed in 2013, but I was 55. Yes, after all the stories, I’ve heard and talked about, everyone’s symptoms are different, because of where your ADEM attacked. However, a lot of our residuals are similar. I recently have come to a new realization. When I was diagnosed, I was admitted to a well known Ivy League Medical School. There were NO doctors there familiar with ADEM at all. They kept insisting I had MS. I had to fight for my diagnosis. Now, 9 years later, MS, still has not shown up. That’s why we’re a Rare Disease.

Back to my realization…in the hospital, I was given 3500 mg. of cortisone in 4 1/2 days. That’s a lot! It worked, however, now what I thought was just ADEM residuals, may partially be Cortisone residuals.

None of us seem to have been totally healed. We’re all left with some type of disability. I try and stay as healthy as possible, good diet and exercise. You need to be as strong an advocate for yourself as you can. Research as much as you can about ADEM and your symptoms. If you need info, I’d be happy to try and send some your way. If you need to talk or vent, I’ll listen. There are other people just like us on the site, all willing to share an ear. Not sure if any of my rant helped, but I will keep trying to help!!! Take care of yourself!

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@24lollies

I am so sorry for what you’ve had to go through. I am pretty much the same age as you (don’t have ADEM), and I can’t imagine how this must feel. I admire your courage to share your story however. You seem to be an extremely tough person, and I hope that you are able to find all of the answers you seek. Your story reminds us all that it’s not just the physical pain, there is a big baggage of other things that come along with having a rare disease like ADEM. Any idea on when you are seeing the doctor @24lollies ?

Best wishes,
Arjuna