I'm curious for those suffering the after-effects of an ADEM attack, are considered "high functioning" but not able to work, what do you do with your days to keep from going crazy? I'm a workaholic, and sitting staring at the TV because I'm too completely exhausted to move makes me feel like a waste of space or at the very least like I'm wasting time. And time? It just seems to fly by. Has anyone tried Lumosity? I play a few games on my phone, but it's hard to focus (eyes and brain) for more than a few rounds. Thoughts?
Second, has anyone had a recurrence of early symptoms during recovery? I've got pain in my spine and at the base of my skull as well as tingling/numbness down my left arm all of which were early symptoms before my attack.
I'm not really having a bad day, just feeling very isolated. And you folks are the ONLY people who might understand,
Laura. My husband, Mario, seems to be having some kind of recurrence. I would really like to see a new MRI right now. Ever since he broke his hand in a fall, he has been getting weaker. Sometimes I can barely understand what he is saying, and he is much weaker physically. I have thought it is from lack of being able to do much w/ the broken hand but it has been healed enough now for almost a month. He too seems unable to focus very long on any one thing. I can't get him interested in any games that might make him use his brain. He says he just can't think sometimes. If you have the ability to get out for awhile do you think you would be able to go to some kind of rec center? Maybe it would be easier to stay focused if there were other people to spend time w/. I know when I am at work I feel terrible that he is at home w/ no one to talk to and unable to do much. Mario also feels sensitivities in his body that seem to change all the time. Try to get out, or maybe books on tape? Sylvia
I do try to get out maybe once a week. Sometimes with a friend, sometimes to a nearby diner for a lunch and I try to read. I've discovered that trying to process new books is too difficult, so I'm rereading old favorites which don't require making new memories. Anything since the "event" is not really sticking, so reading new materials is tough.
But, most days I don't feel up to getting dressed let alone going out. Today was one of those.
I am going to ask my family dr about getting x-rays (possibly new MRIs) on my neck and spinal cord at the damaged areas. I think there is something going on - even if it's healing, I want to know.
It's just so scary (and I imagine it is also for the caretakers) when one of THOSE first pains comes back. For me, I worry when I get bronchitis (which is 2-4 times a year) which we think was the catalyst for my attack.
Laura. I think xrays or MRI would be a good idea for you. Maybe something degenerative is going on w/ the bone now. I am curious about your comment above where you said even if it is healing. Mario frequently makes comments about how the sensations are always changing, and when I suggest we try to do something about it he will say no because it could be healing. What is the feeling you get that makes you think it is healing? Is it different somehow? Mario has trouble formulating thoughts now and usually all I get from him is an "I don't know". I understand your fears about getting sick. I worry about people bringing illness to him also. His daughters don't seem to get it, even though one is a nurse, that the grandchildren can't come around when they are sick. Mario is not allowed to get flu shots (or any immunizations) since that is what is believed to have caused his ADEM. He did get a cold this winter and did well w/ it. Well, I hope you get some answers. We see the neurologist tomorrow for a follow up and I am going loaded w/ concerns. Hang in there. Sylvia
Ιt took my docs 5 mris & 2 lumbar punctures and 8 months to diagnose MS after the initial ADEM diagnosis.
6th MRI showed most lessions are gone. Now I run a business full blast despite numbness, dizziness and eye focusing problems. I overcame the last by wearing sunglasses as light seems to have a negative effect. Still not convinced about what my real problem is.
Indeed I went through a lot of mobility and concentration problems during the first year. Patience is needed and time and the doctors will tell
I got my ADEM from a flu shot. I am still suffering from it. What are your husbands symptoms, how long ago did he have the flu shot etc.
sweetie pie said:
Laura. I think xrays or MRI would be a good idea for you. Maybe something degenerative is going on w/ the bone now. I am curious about your comment above where you said even if it is healing. Mario frequently makes comments about how the sensations are always changing, and when I suggest we try to do something about it he will say no because it could be healing. What is the feeling you get that makes you think it is healing? Is it different somehow? Mario has trouble formulating thoughts now and usually all I get from him is an "I don't know". I understand your fears about getting sick. I worry about people bringing illness to him also. His daughters don't seem to get it, even though one is a nurse, that the grandchildren can't come around when they are sick. Mario is not allowed to get flu shots (or any immunizations) since that is what is believed to have caused his ADEM. He did get a cold this winter and did well w/ it. Well, I hope you get some answers. We see the neurologist tomorrow for a follow up and I am going loaded w/ concerns. Hang in there. Sylvia
Sounds like you might (possibly) have a cervical disc issue. How you ever seen a chiropractic? Then again...did you have those exact symptoms when ADEM first start? As of doing nothing...do you have any hobbies you could do? Just to keep you busy.
Hey Flu shot ADEM. Look at your own member page. I wasn't sure how to address just your question so I went there. I rambled on quite a bit, so the others will probably be happy I didn't address it here. Sylvia
Thanks for all the responses. Lynn, I have seen a chiropractor, and interestingly, I was having issues in my spine for about 4 months before my attack in that exact spot. And that's the same spot that's acting up now.
Sylvia, I don't know if it's healing or not which is why I want to do a follow-up MRI or x-ray. Could be scar tissue. Could be arthritis (my spine wasn't wonderful before this). I just want to know what's going on.
I do think I'm healing as I've started noticing little tiny things that I haven't had since the attack. Such as sensations in my legs that say I've done too much - I got that in February. I was able to make eggs and toast at the same time without burning either. (That's evidence of multi-tasking which has been gone until now, and I can only do that when I'm not tired.)
My hobbies were reading and writing, and right now I cannot do either. My eyes bounce too much and it's very fatiguing. Also, I don't remember what I read yesterday, so it's rather pointless. I am able to write sometimes, but only when I'm really good that day and then that's it for a few days. So I have to choose my days.