Hi, I'm new here. I'm waiting in limbo for an apointment for my son to get an MRI. I hope it happens some day soon yet I don't want it to. He's had some symptoms here and there for a few years and that worries me too. He just kept going to doctors and didn't say a whole lot to us. I don't know what to think. I'm not sure what to do with myself most of the time. I'm down and nervous and just miserable most of the time. Some days I think maybe things will work out and he'll get on some meds or something. Then I worry about the meds, worry about hearing about some JC virus, worry if he's ok . I worry about him and his future. He has no social life right now and that worries me. Most people I see on here are married or seem to have someone in their life. He was pretty active in college but the last couple of years since he's been back home, he doesn't go much. I know he's a bit depressed. I wish I knew what to do for him or some social network to get him involved in. But I wonder if he'd even go. Maybe I could get him to go to a counselor soon after we figure this out. Today is one of those days that I have some bad thoughts in my head and I on occasion I find myself wishing I could go to sleep and not wake up. But I know I can't think like that. He just means so much to me and I'm so worried about his mental state if he has this. I guess I'm venting. I know no one can help me. but it feels like the world is not the place I remember it as. I wish it could get to where I feel like I can enjoy life again and he can too. I wonder if it's possible. But I don't really feel like doing anything and whatever I do feels like such a chore. Thanks for listening.
j, This seems like a good place for you to look at what you are feeling. And to ask him what he is feeling. He may not be depressed, he may be fatigued, chronic illness drains energy making things look like depression when in fact it is exhaustion.
Separating your feelings from his is important, you are both going through something that has roots in family but is not necessarily family related other than genetic. Mothers and sons have a bond and a communication unspoken. The more you communicate the better it will be to sort through your feelings and his feelings. Have you asked him how he feels about what is going on, and what he sees in his future?
Try to stay calm for your son’s sake right now. It’s very easy to panic due to the unknown. MS is unpredictable and can be quite a roller coaster. We’ve been in this fight for almost 14 years and there’s been pretty of ups and downs along the way and there still are more to come. The best advice I have for now is get educated. Stay with reliable sources because it’s easy to go down the rabbit hole. Another big lesson we learned is that even if it means multiple doctor appointments, don’t stop til you find a doctor you’re comfortable with. General neurologists are okay but those that specialize in MS seem to be much more willing to go the extra mile. I also learned my daughter had to get to her decisions on her own. I could offer the assistance but if she wasn’t ready, it just didn’t work. It takes a lot of processing on their side too. If you or your son want specific disease related advice, you can call the “MS Navigators” at 800-344-4867. There are lots of good discussion groups on this site. Stay strong. Taking care of yourself is important if you want to be there for him.
I understand completely what you are talking about. I spent the whole last month worrying about this illness as to whether or not I have it. But when I finally had my MRI, it still left some gaps in the translation because the doctor would not say other wise except that I had scarring on my brain, and I had white blood cells in my spinal cord. I do have other symptoms too like the weakness in my legs and numbness, including the "MS hug" which feels like a belt around your stomach when there's nothing there. All I can say is, stay strong because there are people out there like me that are experiencing the same worry and concern as you, and we will get through this eventually. From what I've read, MS doesn't mean it's the end.
Thanks..I'm trying to hang in there. But I think what's hardest for me is that on occasion in my gut I suspected he might have this. But doctors would give him something or he would just go on and he seemed ok most of the time. I keep thinking why didn't we do something to investigate this years ago. Little issues going on for several years, but so often it was vague stuff. But when something got resolved, we just went on with our lives . I just didn't believe it could be this I guess. So, I wonder did I ruin him by being an oblivious fool? I feel like such an idiot. Like a failure as a parent. He hasn't had the MRI yet but I feel like someone will have to pick me up off the floor if it's really bad.. Today I feel like my world is collapsing. Wondering how I'll face this. I know I'll blame myself if it's bad. I also worry how he will deal with this. Then I think what if he doesn't get relief?! It's such a bad dream! Like what the heck happened?! I know I'm carrying on and there's not a lot I can do except hope and pray. I feel for anyone going through this. It's so hard. I just hate this hopeless feeling I have.
If you or your son has any questions, please do not hesitate to call 1-800-344-4867 to speak to an MS Navigator. We are happy to provide referrals to a counselor in your area or discuss any concerns you may have as well.
MS Navigator Abigail