Hi Lynn, it sounds like we had a similar experience. The one thing to keep in mind is that everyone is different, from symptoms to recovery. Please try to let go of the time-frame. Your body will heal when it does. I just passed my 1-year anniversary, and I'm still out on disability. But I am getting better. This is a life-altering illness, and it will go better for your recovery if you start thinking that way. It sucks, and it's frustrating, but once I accepted that, I was much nicer to myself.
LauraK
Lynn said:
Well I came down with ADEM in April of this year. I basically developed symptoms over night. I had heavy pins and needles (like when your feet are asleep) from the bottom of my feet to my waist. The next morning it was up to my chest. In a matter of a couple of weeks I lost function of my hands. My husband is a physician and ran all kinds of blood tests, which were all negative. Finally a radiologist found ADEM when my husband ordered a cervical MRI. That doctor told him to get me to the hospital so I can get the IV cortisone which was all they can do, apparently. Well after 4 1/2 days of that, 70% of the symptoms disappeared. I was told that all should clear up, but it could take 6 months. I'm at 6 months now. My husband read on the Cleveland Clinic site, that it could take a year. Compared to where I was 6 months ago, I'm doing good. I can use my hands (or flippers as my husband calls them), but I still have all the symptoms (feelings) in my hands. I'm just now, slowly, starting to type with more than 2 fingers. He noted to me just last week, that he thinks I might have some mental something going on. I apparently, am more sensitive. I do feel like words are coming somewhat slower, if that makes sense. It is alarming to hear you and a couple other people say, you still have symptoms after 5 years. I hope these hands clear up before that.
Iām 37 & looking back I was having symptoms and blew them off as something else . About 3 months ago I started.feeling confused , extremely tired . I figured it was from work . Then around the same time I was noticing I couldnāt cover my right foot up because it was feeling like it was being mashed down . About 2 weeks after that my toes and bottom of my foot started going numb , then next day my whole foot , by 3rd day up past my ankle . On the 4th day I was numb from my toes to my waist. I was concerned , so I went.to the ER . They did a CT of my brain , it showed a lesion . The ER dr came in and said Iāv had a stroke . Then they did a MRI , he then came in and says I think youāve had a stroke and you have MS . He decided to transfer me to a larger hospital . They did another MRI , the neurologist started me on a high dose of an anti inflammatory drug . Next day a pic line was placed and I was sent home to administer this drug my self and to follow up with a neurologist . By that Monday (2 days after being d/c ) I started having confusion , stuttering and the numbness by then was my entire right side , including my face . The pain was unbearable . They admitted into the CCU and did another MRI . It showed the spot on my brain had grew in size. They did few more iv anti inflammatory drugs. My entire right side was burning, hurting and in.so much pain. The neurologist unclear as to whatās wrong with me transfers me to another hospital 3 hrs. away . There they did more MRIās , another spinal tap ( forgot to mention.the hospital before did one) . At this point I was.unable.to walk by myself. My body was so numb waist down I couldnāt feel a thing. The pain still unbearable , they started me on a pain nerve pill , sent me.home few days later . With in few days being.home.I was able to walk alone still same symptoms but I had improved somewhat . Itās 2 months later and now They are saying adem or MS . ANYONE else out there have same symptoms as me ? I use to have pretty hand writing , now Iām lucky.if I can read it. I shake so bad , sometimes itās hard to feed myself. Thanks for reading. God bless you all!
When I was at my worse, my handwriting looked like a 95 year old, I'm 55. I couldn't even sign my own name. When I was in the hospital, I couldn't even take the top off of a water bottle. Talk about frustrating! I am now at the 10 month mark and I'm able to type at the computer (with all my fingers), but my handwriting is not what it once was. Some days it looks good and when I'm anxious or tired, it's not so wonderful. It is a one day at a time kind of thing.
What is the China Study? Where can I find their guidelines? Thanks, LauraK
SweetKnits said:
Be eternally grateful for that wonderful husband. Mine opened all the doors and gates and turned my dogs loose on the street when he heard my initial diagnosis. I am in the midst of a divorce - something I never expected. But his own issues prevent him from caring for me in the manner I now need. We remain cordial, and I do miss him a great deal. But he cannot step outside of his OCD problems to see that I can no longer manage what I used to manage.
To say ADEM abruptly altered my life is such an understatement. The physical and mental problems were just the tip of th iceberg. I now live 120 miles from my home of 30 years - away from children and grandchildren. The illness stole much more.
Nutritional support is key I think. I try to avoid animal products completely and always feel better on the days I adhere to the dietary suggestions from the China Study. Whole foods from safe sources are difficult and expensive.
Don't downplay your own suffering. I am reminded of Victor Frankel's statement in "Man's Search For Meaning" when he remarked that suffering is like gas in a balloon. It fills up the balloon no mater how large or small the amount.
Hi Lynn - I tried searching the Cleveland Clinics database for ADEM and it came out zero. Do you really have to spell out the disease or did you search another way? Thanks, LauraK
Lynn said:
Colleen,
Have you looked into the Cleveland Clinic? I found online, neurologists that specialize in ADEM. If I were to see anyone else for my ADEM, it would be at the Cleveland Clinic as they seem to have done so much research.
ADEM does change everything! My husband had to do just about everything for 2 months, business, house, food and me. The only good thing that came out of this was, at one point he said, "I can't believe everything you have to do!" I am lucky. Nutrition does make a difference! YOU NEED TO KEEP YOURSELF HEALTHY AND YOUR SYSTEM STRONG!