I was diagnosed with ADEM in 2008, and was told at that time to not receive any more vaccinations. I mostly recovered from the attack, but still do have lasting issues. My question to the community is this: my neurologists are now encouraging me to get the Covid vaccine, and I’m wondering if any other ADEM survivors have gotten it, and if so, were there any adverse reactions. I understand that the medical community has to give advice that will benefit most of the population, but I feel that any negative information (true or not) is being suppressed. I am on the fence!
Hi and welcome to our gang! I too was told no vaccines. I have not and will not have the Covid vaccine. I am 62 and I am not willing to risk ADEM again…had enough the first time. There have not been any safety reports as of now and I know there have been cases of people getting ADEM after having Covid. I think each person needs to weigh the benefits and risks for themselves. I simply take precautions and try to safe as healthy as possible.
This is just my opinion, but I hope it gives you something to think about.
Lynn
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Thanks for the welcome and the comments! I’ve been told that the Covid vaccine works differently than previous vaccines, in that it interferes with a protein that is on the surface of the virus. Unlike the older vaccines that actually put a “piece” of the virus into the vaccine. My ADEM developed in 2007, 4 days after receiving the second dose of the Hep. B vaccine. I like the new technology, but since there is no data to support that it’s safe for the immuno-compromised population, I’m not convinced!
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As an organisation Ben’s Friends advises to ALWAYS speak to your Dr/s.
On a personal level, there are simply too many variables, and let’s be honest COVID hasn’t been with us long enough for all of the adverse effects vs underlaying conditions vs brand of vaccine (Because each brand uses it’s own ‘technology’) to be established, let along worked on. I’m in Australia and here they we’re umming and ahhing over whether children should have the vaccine not that long ago. My understanding is that it’s only been within the last month that children have been approved here. The advice on which is best, or which is better, for which age group is still being adjusted and that’s without any consideration for underlaying conditions. There has been issues with one vaccine and the media coverage has made the uptake of that brand drop like a lead balloon here in Australia. We have access to 2 brands of vaccine here presently with more brands coming online as they become available, but which is best?? Nobody knows.
And I suppose this is why we recommend that each person needs to speak to their own Dr. A professional who knows that individual’s personal circumstances, medical history and most probably has more information regarding the adverse effects.
Merl from the Modsupport Team
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Hi! I was diagnosed with ADEM February of 2019, and I’ve gotten both of my doses of the covid-19 vaccine from Pfizer. I asked my neurologist in December about vaccines and which ones I can take. Took both the flu shot and pneumonia shot last fall before I asked, which was on my own risk but I got ADEM because of the flu so I didn’t want to risk a backlash. Either way my neurologist told me that I can take vaccines as long as it’s not a vaccine with pathogens that are alive and weakened. 
Btw I’m from Sweden and maybe the recommendations are different depending on where you live
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Hi I got adem 2018 was bad attack. I’ve had both vaccines and I’m.fine my advice would be to have them get protected.
I had Adem in January and was in The hospital for two months, two months after i was out the neurologist said I could have my vaccines and I’ve had no issues I still have lasting issues from the AD EM
And that’s not just in Sweden are they different. The recommendations can be vastly different region to region in the same country, which only confuses the matter further. Every politician has a view, every dr has a view and then every health department has recommendations. No wonder people are all so confused.
All we can really do is listen to our own health professionals.
Merl from the Modsupport Team
Hi Leslie. Did your ADEM occur after an illness, or after a vaccination?
Hi Kazflash. Did your ADEM occur after an illness, or after a vaccination?
Hi “S”. My wife was hit by ADEM in 2017. She has made a brilliant recovery so far as her mental state (was real bad, like she got advanced Alzheimer’s in 1 week), now all sorted. She still has the wobbles when walking and the damage to her optic nerves, still she is back taking good photographs and a razor sharp mind (at times to sharp LOL). We were also faced with the dilemma of the jab (we are in our 70’s). The Neurologist suggested the jab.We both have completed out double jab of the Pheiser vaccine with zero after effects, other than a dollar sized bruise on my wifes arm after the second. At least I now feel a little safer having had the jabs.
No I wasn’t sick, I was holding my grandson son and he starts slipping from my arms it arms and all of a sudden I couldn’t talk talk or hold anything I just went downhill from there
Wow…that’s terrible! I don’t know of any other case in which the person didn’t have an illness or a vaccine before the attack. I’m glad to hear that you are doing well!
Thank you
I still have troubles troubles walking normally and talking normally but I’m getting there
Hi - it seems the advice varies! Following Adem 4 years (then 13) ago my daughter was put on the list to receive flue jabs. This year she was one of the 1st under 18s in the UK to receive her Pfizer Covid jabs - the medical centre did not even know they were allowed to vaccinate an under 18.
The mechanism for the Pfizer vaccine appears to be much less problematic for those who may be suspceptible to viral reaction and it is also known that the problems of long covid for younger women can be severe. As my daughter still struggles with fatigue and other issues, the thought of another set back from covid is scary - so the benefits to my mind (and it seems to her nearologist who is the leader in his field in the UK) far outweigh any risk. For us it gives us some peace of mind and for her it opens opportunities that are closed to her pears in terms of going out to certain things and travel. She suffered minimal side effects.
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I was not sick when i acquired it, just thought i had an upper respiratory infection, went to the Dr, took the 1st dose of Z-PAC and went to bed. But i woke up 10 days later on a ventilator. Not cool at all. I also had AFM (Acute Flacid Myelitis) dont know where or how i acquired them both, but gratefully i am about 97 percent recovered.
I also am contemplating taking the vaccine and worried about acquiring ADEM again (Especially since i had AFM too! my 2nd Neuro said i should get another MRI and EGM to check my level of healing. With the DELTA variant i’m told i’m basically a sitting duck if i get it. I work full time, and i Pastor a church so i’m expected to be around folks quite a bit. I could just retire and be a hermit but i just don’t see that as a quality life. Family gatherings are an issue to, unvaccinated, everyone in the family has been vaccinated except for me, and i can still get it from vaccinated folks i understand.
So, i have somewhat of a quandry on my hands. No body wants to be THAT GUY, who cant go, be around or mix with people!
You really went through the wringer with both ADEM and AFM. It’s astonishing and wonderful that you are 97% recovered! Our bodies truly are amazing. I know what you mean about being THAT GUY 
I was really concerned about getting the vaccine, since my ADEM seems to have been caused by the Hep B vaccine. I was not sick at all before getting that vaccine. But, after speaking with two neurologists, and other docs, I decided to bite the bullet and get the Covid vaccine. Yesterday, I had the first injection of the Moderna vaccine, and so far the only symptom is a sore arm. I’m saying prayers that it will remain that way!
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You and I both. My Dr’s called me Miracle man in the hospital, i really should either A: Not even be alive or B : Not physically able to do what im doing. God has a great sense of humor, everything is pretty much normal, but my sight took a beating. I can still see with and without my reading glasses i just have to wear them if i want to see things clearly! I pray you keep doing well also, and i’ll let you know what i find out and hopefully when i can get my 1st vaccine. Take care and stay away from the DELTA!!!
I had ADEM about 3 and a half years ago and haven’t had a vaccine since, apart from my COVID vaccines. I have had both of mine and had no unusual reactions. I got the Pfizer one because I am under 18 and because it is designed differently to older vaccines. It doesn’t activate your immune system in the same way making an attack of ADEM less likely. My Doctor encouraged me to get it because he felt that there was more of a risk of a relapse with COVID however everyone’s different and since I am still in school I have a much higher risk of coming into contact with Covid compared to someone who is able to work at home and only see limited trusted people. I have also seen it is different depending on where you live and who your doctor is, I live in the UK and my doctor is a Peadiatric Neurologist so depending on different doctors experiences there advice might be different.
I would definitely recommend looking into how the Pfizer vaccine is different and how it reacts with the immune system.