Im sorry that I have been asking all these questions lately but i am just trying to see if anyone else feels the way i do sometimes. Every once in awhile i just dont feel myself. I feel kind of out of it. Does anyone else feel tjis way?
I'm not sure about feeling out of it, but I can tell you that my husband feels that I am more sensitive and he feels that I am a little something different...whatever that means. Is that anything of what you are feeling?
Lynn
Hi Michelle
Yes I do sometimes, I feel like I'm not 100% especially as I'm walking, I feel light headed or something similar, balance is a little wonky, I don't know it's had to explain, its a strange sensation. I don't know if it has got anything to do with the scaring from the legions on the brain, or if I am just tired, or what. I'm about 2 1/2 years post ADEM plus an unknown virus, I called him sniper, my condition is quite rare here in Australia, every time I ask my Doctor something, she just looks at me and say,s I don't know. My neurologist, because I was in the public system does not have the time to sit there every time I have a question. Unfortunately their seem's to be a lot of side effect's which no one has the answers for. This could be the product of an acquired brain injury, who knows, sorry to go on, but yes I do understand what you are experiencing, maybe not the same but similar.
Cheers Rob
Hello Michelle,
Yes, I also have times where I am just not with it. There are good days and bad days. The bad times usually slow me way down. I can’t come up with words that I want to say. My balance is often not very good. If I am stressed or tired, I have a rough time.
I have been on disability since ADEM hit me. I would love to have a job. My MD said it would not be good for me. Having people get upset with me for not being able to be consistent would be too hard on me emotionally. Like Lynn, I am more sensitive than I should be.When I can’t get things right, I get very upset with myself.
It has been 4 years now for me. I am not the same person that I was. Yes, I am much, much better than I was, but it has been a long haul and the road still winds. It took about 1 1/2 years of physical therapy to get me walking without needing a cane. Still, some days, I have to be very careful. So, yes, I understand what you are talking about. It does get better!
Karla
Thank you all for replying! I also have good days and bad days. My bad days I feel extremely tired and my balance is very off. Sometimes i cant get out what I want to say. I think it but it comes out completely different. The only thing that pushes me through the day is my son. I dont feel like i was before at all. I am much more sensetive than i have ever been. My doctor thinks it is over and it is very rare to replapse with ADEM. Its hard for me to believe him with the way i feel sometimes but i have to trust him since he has delt with this before.
What does he mean when he says that it is “over”. That you won’t have a relapse? I have been told that it is rare, also.
I wonder after reading others comments here, if some recover totally? I have not, but feel that I try to keep a positive attitude. I have made a lot of positive changes in my life since all of this has happened. My neurologist told me that I will not get any better than I am.
The fear of a relapse is there for me. I have cancer (Multiple Myeloma), and they have been progressive with treating me early, hoping that my brain does not get attacked again. Having that in mind, does not help.
Sorry if I am repeating myself. Not sure if when I make comments if people know my history.
It is good that you have your son to keep you occupied. How old is he? I look forward to things to come, to keep me going,
Best of luck to you. I will keep you in my prayers.
Karla
I have reached the 5 year anniversary of my first acute attack today! Whew! My neurologist stated that no recurrence in these 5 years means I am unlikely to develop MS.
But to the question: do I sometimes not feel like "myself"? The answer is yes. I can feel stodgy, mentally dull, and unstable on my feet. I discovered two years in that I am severely gluten-intolerant when my regular doc ran the antibody assay to see if by some bizarre quirk gluten could be responsible for my severe anemia. Yep! No longer anemic, BUT any gluten contamination incident means a return of the pain along the damaged nerves. Go to bed and take lots of narcotics type pain.
Now, whenever I no longer feel like myself, I run a mental check for possible gluten sources in the previous two days. This week I discovered Safeway brand onion soup has a hidden source of gluten not reported on the label. Its like a very bad detective story.
Deborah
Not to disappoint you, but, my Adem was diagnosed over 7 years ago and I occasionally still have those feelings.
Karla, im not sure what my doctor meant by saying it is “over”. I think he meant i will have no more seizures and my lesion is not active anymore. I feel normal for the most part but like i said, i have my good days and bad days. My son is one now. It has been a bad year for us. Being in the hospital while relatives have had to take care of him. He definitely keeps me occupied and i wouldnt trade it for the world! I wish the best of luck to all of you as well. I can handle the occasional day of not feeling normal opposed to having another seizure due to this. Hope we all get better!
I'm very glad you seem in a better place. Enjoy that baby!!!
Lynn
Thank you Lynn!
It has been so good being part of this discussion,we do share similar experiences, being positive has helped me a lot, and trying to take the stress out of my life is good. It is ok to say this, but we all know that it can be hard sometimes, yes the old good days bad days, the mood swings etc. Friend's will say your looking so good, you must be well, I have given up trying to explain to them, they don't know any better. So I just say, yes I,m going great thank,s. I don't know if we will all be 100%, or even relapse again. We just need to appreciate each day, and I thank God for that.
Rob
Staying positive and trying to stay stress free is so important. I simply concentrate on not what my hands feel like, but what I have been able to do.
Lynn
Rob, you are right. We have to appreciate every day. I also dont tell people how i really feel. I just say i am feeling very well thank you for asking because its so hard to explain to people how you are feeling. I am so glad i found this website and foun all of you to talk too. It makes me feel so good to talk to every one of you and know that im not alone. Staying positive and stress free does make you feel so much better and is very important. Thank you everyone for talking to me about this.
I know what you mean. If I've overdone it, pushed too hard or it's just one of those days, I feel like a zombie walking through a world of molasses. Or as my husband says, "I'm 8-bit in a 128-bit world." For me it usually indicates I've tried to do too much or I just need rest.