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.
I guess this is a good thing. My new neuro says that a lot of my issues are more likely to be caused by an inflammatory disorder. I've already seen a rheumatologist. I've been tested for almost everything and everything is always normal. He said he can't even definitively say that I have "clinically isolated syndrome" because my brainstem was causing issues and did not have a lesion and that was unexpected/not normal for MS.
Worst case scenario is that this is the beginning of MS. However, since I've been having symptoms for years and only have one lesion, he thinks that is unlikely. If I had MS for the past 3 years and it was causing all of these symptoms, he seems certain that I would have developed more lesions.
Best case scenario is my body is having a weird reaction to a virus. Since they can't detect some viruses it's possible that some hidden sickness is rearing it's ugly head at weird times and in weird ways. He said that the O Bands can be caused by viral activity so my spinal tap doesn't even really lend much to the diagnosis. My lesion is tiny and all by it's lonesome so it may have been caused by my 15+ years of smoking. It's still possible that all of this will just magically go away...
We will repeat my cranial MRI in 3 months. If it's normal, we'll repeat it again 6 months after that. If any new lesions appear in my future MRIs, it will be called "probable MS." That wouldn't even cement the diagnosis.
Basically I'm still floating free in limboland. Yippee????
Worst case scenario is that this is the beginning of MS. However, since I've been having symptoms for years and only have one lesion, he thinks that is unlikely. If I had MS for the past 3 years and it was causing all of these symptoms, he seems certain that I would have developed more lesions.
Best case scenario is my body is having a weird reaction to a virus. Since they can't detect some viruses it's possible that some hidden sickness is rearing it's ugly head at weird times and in weird ways. He said that the O Bands can be caused by viral activity so my spinal tap doesn't even really lend much to the diagnosis. My lesion is tiny and all by it's lonesome so it may have been caused by my 15+ years of smoking. It's still possible that all of this will just magically go away...
We will repeat my cranial MRI in 3 months. If it's normal, we'll repeat it again 6 months after that. If any new lesions appear in my future MRIs, it will be called "probable MS." That wouldn't even cement the diagnosis.
Basically I'm still floating free in limboland. Yippee????
He said that if he could give me something as simple as a baby aspirin to fix me, he would. But MS drugs are much more serious than that and come with A LOT of side effects. He doesn't want me to go down that road if I don't have to and I do appreciate that, I guess.
Also its fine the neuro telling you to stop worrying about it but we are human and thats what we all do best. Over thinking and worrying when we don't get told what is wrong. But try not to stress over it.
I have been given a drug that has a few side effects but at this point I'm willing to try anything. But still not sure about taking it, guess I will find out if its worth taking soon enough.
((hugs))
Im trying to get in to a neuro that specializes in and rheumatologic diseases. And Im seeing a Lyme specialist on the 28th since this all started with contracting Lyme last year. All I can do is hope I get some answers and treatment started before my insurance runs out. Good luck to all us Limbo Landers!