Oh, I know that frustration! My first neurologist kept patting me on the back and saying, "You're better. Focus on that!" Then he sent me back to work 3 months after my attack! Needless to say, I'm out, unable to work, and I think that was the worst of it - having a specialist tell me I'm fine. They don't know enough about this disease to accurately predict anything.
Again, hang in there. I do believe the body can heal itself. I also believe the new me is going to be able to do and not do different things than before.
Laura I made the choice to go back to work but I said light duties and they thought because I looked fine then il be back to normal by march and can do full duties, I did try but didn’t do to well, my fatigue hit. My neuto did say Vicky do you not know where you have been, I was like no that’s the problem and he did tell me off and has now said not back to work full time until it’s been a year out of rehab, hard to hear but I now know he is right.
I know the feeling. Hard to remember what happened when you just want to get back to "normal." I myself have been officially "let go" as my one year anniversary of the attack came and went. My neurologist pointed out that if I'd broken my leg, there would be a cast. I broke my brain, but there's no cast for it.
I'm coming in late to this conversation, but after my one year anniversary of diagnosis, I still have symptoms in my hands, which may never go away. My walking cleared up after my treatment of steroids. My husband tells me my personality is a little different, though he can't really explain it. I'm lucky to have a husband that has been very patient and willing to work with me. Fortunately, we work together and from home, so I am flexible with hours and how long a task takes me. I had to learn how to use my hands all over again. Typing is much slower and thank goodness for spell-check. I CAN do everything with my hands, it just may take longer and I have to concentrate more. Patience can be a difficult thing. BUT as I tell everyone, I am glad for every improvement, as compared to where I was this time last year. We can be grateful at this point, that we can achieve new heights each day. I am thrilled that I can cook again. I can sew for the most part, a little more difficult because of the sensations in my hands, but 6 months ago, things were much different. When my emotions get away from me, I try and sit quietly until I feel a calming coming on. Listening and talking to others on this site has helped me a great deal. I am luckier than some, so I know that I can't complain.
Hello Everyone! I know this thread hasn’t been touched in more than 5 years, but we’ve got a new member, Joy (@Shymom) , who would appreciate our help! Her young daughter was diagnosed with ADEM, and was given steroids to halt her lesions. While (thankfully) there have been no new lesions, she is currently struggling with depression, and holding information in her memory, along with neck pain.
I know many of you have had similar experiences, and all of you can attest to the level of patience and resiliency needed to see a loved one recover through this tough time. Joy would greatly appreciate any sort of information you can provide her!
You can find her profile at @Shymom, if you would like to DM her instead!
We would love to hear how your daughter is progressing Joy, and we hope you are able to find what you are looking for on here.