Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
Neuro visit this morning. The usual checkup. Nothing better, some things very slightly worse, and still no DX. I always come away from these things asking myself if I really want an MS DX? But something is WRONG and it's hard not having a name for it.
I live in Japan and the guy I see is one of the best in the country. But he is in Japan and there's the lingering doubt in my head about whether he has the same experience as somebody in the US, since MS is much less common here. Of course, I can't keep on with new doctors and more tests forever, and my insurance is in Japan, so a US neuro visit would cost $$$$$. It's also not as if family members and friends just have a neurologist they can recommend.
Anybody have a good way of dealing with this uncertainty? I've tried to find a funny name for the situation, but "Maybe MS" is the best I've come up with and not too catchy. Trying to frame my thinking so it doesn't get me down....I am grateful I can still do most of what I want (climbing stairs is getting tough, though) but that only goes so far.
Whine over. Thanks for listening.
I live in Japan and the guy I see is one of the best in the country. But he is in Japan and there's the lingering doubt in my head about whether he has the same experience as somebody in the US, since MS is much less common here. Of course, I can't keep on with new doctors and more tests forever, and my insurance is in Japan, so a US neuro visit would cost $$$$$. It's also not as if family members and friends just have a neurologist they can recommend.
Anybody have a good way of dealing with this uncertainty? I've tried to find a funny name for the situation, but "Maybe MS" is the best I've come up with and not too catchy. Trying to frame my thinking so it doesn't get me down....I am grateful I can still do most of what I want (climbing stairs is getting tough, though) but that only goes so far.
Whine over. Thanks for listening.
boy do I feel your pain, my husband has taken to calling it an MS like condition. but you do get to thinking that others don't believe your symptoms are real and I am sure one goes through a heap of tests one doesn't need to rule out psychological conditions etc. we have really tried to take one day at a time and to focus on the positives in life however difficult this is some days
I can relate to your posting . Slbale, you are amazing and caring for your spouse. I also have classic MS symptoms, abnormal neurological exam and diagnostic findings except I had negative LP, therefore, diagnosis for MS is on hold. Its been expensive and emotionally draining to say the least. My working diagnosis is Ataxia, Rt hemiparesis, Brain AVM and dysautonomia which can all mimic MS. I have two awesome neuros that are working with me and plan not to give up. Going to have genetic testing for ataxia to finally rule out possibility for MS. Its frustrating not having exact name to an ailment. So many conditions that affects the brain/white matter mimics MS. I have a lot of the symptoms that most MS patients have on this forum and textbook because of the part of my brain that is being affected, however it may not be MS. Let pray and be patient that we get answers soon. For me the ataxia has no cure or specific medication or treatment and most likely affecting my autonomic nervous symptoms as well. I stay on this forum because I can relate to everyone here and they have been amazing and support. I may not have MS but I deal with the symptoms that they have except mine has no treatment. Best wishes and stay strong.