Hi all. I’m 32 and was diagnosed with ADEM after 2.5 months of full body spasms, numbness and tingling on my right side, short term memory loss and brain fog a few weeks after high fevers, chills, and a “cold”. Neuro thought it was just post-viral syndrome that would be gone in 8 weeks, but brain MRI showed multiple lesions, including one on my left thalamus that is causing the right-side issues, and that led to the diagnosis. When the symptoms first began at the end of March, I immediately switched to a low-inflammation diet (low-residue diet) in case it was MS and to get ahead of the game. I also go to acupunture, eat Manuka Honey, take VSL #3, turmeric, CBD oil, multivitamin, I work out regularly and am now on medical leave from work in order to avoid stress. My spasms ARE STILL THERE and keep me up all night. My right leg also feels like it weighs 100 lbs most days, my right arm/hand goes numb still, and my left-side skull and eye twitch all the time. How long will this last? Are these symptoms expected to be long-term? I feel I’m doing everything in my ability to try to limit inflammation, but my neuro said the damage has been done, and we just have to “wait it out”. I was not treated with any meds/steroids. Any suggestions you have for how to lessen my symptoms are much appreciated! Thank you.
I was diagnosed at 37. I am now over a year in. The numbness in my hands continues as well as the spasms. My Doc says that the numbness will likely remain.
Hi, I was diagnosed with a d e m in 2007. I’m 54 years old. The best thing I can tell you to do is keep on moving, I know what you’re going through
Try to take a potassium supplement, two pills in the morning, two pills an hour before you go to bed it might help on the spasms
I lost all function of my hands where I had to learn to use them all over again. 5 years in and I still have the numbness, pins and needles. I consider myself LUCKY though compared to what some others have had to go through. After the past 5 years…I am good! Lynn
After reading your symptoms, this sounded so familiar. This hit me at 54. On my left side. Especially my left leg. Yes, I found out later it was viral. Epstein-Barr Virus and non-rashing Shingles (Internal). These are both in the Herpetic Virus family. It isn’t as scary as it sounds when you fight back with Antiviral foods. We are all different how fast we recuperate. I have gone through the M.S misdiagnosis, focused on and researched on my own the viral issues. I am, glad your Neurologist has not put you on any meds. I was put on immunosuppressants initially, by one Neurologist. This will slow healing down. Since then, I found a Doctor who is against prescribing those meds and is more open minded about me healing through a clean diet and good Supplements. Building back up my immune system. Are you on a low residue diet because of digestive issues also? My spasms, numbness and neuropathy are finally gone. No, I don’t have diabetes. I also learned (some Doctors know and some don’t) that viruses feed on things we eat. When you don’t feed the cause, this is a big help.
@Mmarr you sound the model of a good recovery strategy!
What did I do differently? Not much. You have it down. The one thing I also did though is looked into the Ayrurveda side of things. That provided me with more anti-inflammatory foods and also flagged some things that are inflammatory that I hadn’t expected. Either way what none of the books tell you is to avoid inflammatory people, music, stories and news: none of them help lol.
How long does recovery take? Based on asking other survivors it totally variable. At least, the people that I asked. It also depends on your age, and then, all of the lifestyle choices that you listed.
I am at year 4.5 and I still get the right side issues. I laughed when you said your right leg is 100lb. Well after 4.5 years my right leg weighs a lot less when I am triggered.
Anyway thanks for sharing and reaching out. Nice to meet you.
Thanks @Occipital ! I’ve recently added a turmeric pill to my before bed routine, and that seems to help the spasms a lot. Glad to hear I’m doing things “the right way”, and others can relate. I know I am very lucky that I did not and do not experience many of the severe symptoms others have here (paralysis, loss of speech, sight, hearing, etc.). I’d like to credit that to my age, active lifestyle, research I’ve done over the years re: alternative medicine, as well as my awesome acupuncturist, May Hsia, who has made it her mission to help me stimulate new cell growth and improve circulation however she can. I realize that I am simply uncomfortable now, but the worst is over and I can only continue to heal from here. Nice meeting you, too!
Hi @Sonie. Yes, I’ve had severe IBS and Raynaud’s since I was 7 years old. When I first noticed the ADEM symptoms, I was also in the middle of an IBS flare up and decided to really commit to doing whatever was needed to get my inflammation under control. I found the low residue diet through IBS/IBD support forums, started it immediately, took Xifaxan for presumed SIBO, and then started VSL #3 right after. My acupuncturist suggested Manuka Honey for its anti-viral properties during this time, and I am forever grateful for her. I’m also fortunate enough to work for one of the leading academic medical centers in the Baltimore/DC area, and many of the physicians there do not believe in handing out medications willy nilly. Thanks for reaching out to me. It’s nice to know I’m not alone, and that I can only (hopefully) get better from here.
Thanks @Jeff! I am incredibly active, and even when I feel numb or like my leg is a block of cement, I force myself to either go for a walk or hit the gym. Question – have any doctors suggested avoiding certain exercises? i.e. running, jumping - things that “slosh” your brain around?
Hi @Ronnica. I really hope what your doctor said is not true. My neuro told me that I should begin to heal and feel better, but that its likely I may get a flare up again if I’m sick or under a lot of stress. Have you tried traditional chinese medicine (acupuncture, herbs, cuping)? If not, I highly recommend it - not only for the circulatory improvement, but for the stress and anxiety reduction. On days where I can’t feel my leg or foot or hand, I force myself to go for a walk or lift weights and that seems to “wake up” my extremity a bit. This isn’t a cure for the numbess, but it helps me stay sane a little. Wishing you the best of luck in your recovery!
@Mmarr, heavy lifting it’s not good for a d e m, because the brain swells against the skull. I’m on a 10-pound weight limit. I would try avoiding lifting weights or anything heavy because that puts pressure on the brain against the skull.
I hope you heal soon too.
When my right arm and leg hurt and are a little numb and don’t want to bend it exhausts me so when I go for a walk I get really exhausted. Does that happen to you?
I was diagnosed at 37 also ADEM
It has been over 2 years and i still have , memory loss , numbness, stiffness
It is a struggle to get used to, but life is precious and must go on.
Be strong !