My current neuro would like me to either go to Mayo or a local university center to see a general neurologist. He's here for me if something happens before a dx can be made and would treat with IVSM if severe. He's following me clinically, but at a point where he doesn't know what other tests can be ordered and can't dx on the information we have.
In the meantime, I'm trying to decide if it's even worth pursuing at this point as things are much more calm than last year. The docs have ruled out just about everything. I had a little flare up with the flu that's been running for a few weeks now, and still having minor trouble with blurred vision with a dark spot in one eye (too small to be picked up by testing), leg weakness and diaphragm spasms.
My current plan is to do some PT to try and get back the endurance and strength I've lost over the last year, and I've ordered a generic script for provigil to manage the fatigue. Beyond that, I'm sort of stuck and could use some sage advice.
I've looked over the local university neuros bios and am having difficulty finding one that would fit with what's been happening. The neuro-opth mentioned in her report that the visual sx and signs could be caused by migraines or demyelinating disease. The VNG showed central and peripheral lesions. The sleep study revealed no REM sleep. My DTRs are brisk but not pathological. And other than these things, the only visible signs I have are tremors and eyes that don't always track together.
General neuros in the city all have their own little sub-specialties or personal interests. If I go that route, obviously, I'd like to choose the one that is going to be able to sort this out.
I've narrowed it down to maybe five and would appreciate any input on which would be most appropriate.
There's one who specializes in sleep disorders, and in particular, sleep disorders in PwMS. I could use some help with the sleep issues, but don't want to be viewed as chasing down an MS dx since everyone says this is not MS. So when I saw this, it sort of put this guy on the back burner.
There's the center at one university that has specialists in neuro-opth, neuro-acoustics, neuro-urology, and sleep disorders. But they're all different docs (the one neuro-opth is also a neuro that specializes in demyelinating disease and neuroimmunology). I have problems with all of these systems, but they wax and wane. Again, this is a place that specializes in MS and other demyelinating disease. Do I avoid them because of their specialty focus?
And then there is one that specializes in migraines/migraine research and dx migraines. He has another specialty in strokes and vascular disorders.
Other than that, there are the neurophysiologists and movement specialists. Many of them specialize in Parkinson's and genetic disorders like muscular dystrophy. Although, they might be able to pin things down with the patterns I have with the gripping muscle spasms and tremors.
And finally, there is the Mayo, which I'm trying to avoid because of the expense and travel required.
I'd be happy to answer any questions anyone might have to help narrow this down further. I'm still on the fence as to whether to pursue this further or not. Things being fairly quiet right now is making that a whole lot easier to do. In this case, I can just continue to see the neuroimmuno I've been seeing who has made the dx of complex migraines which explains everything but the bowel/bladder issues, and hope nothing more happens until they figure it out with time.
In the meantime, I'm trying to decide if it's even worth pursuing at this point as things are much more calm than last year. The docs have ruled out just about everything. I had a little flare up with the flu that's been running for a few weeks now, and still having minor trouble with blurred vision with a dark spot in one eye (too small to be picked up by testing), leg weakness and diaphragm spasms.
My current plan is to do some PT to try and get back the endurance and strength I've lost over the last year, and I've ordered a generic script for provigil to manage the fatigue. Beyond that, I'm sort of stuck and could use some sage advice.
I've looked over the local university neuros bios and am having difficulty finding one that would fit with what's been happening. The neuro-opth mentioned in her report that the visual sx and signs could be caused by migraines or demyelinating disease. The VNG showed central and peripheral lesions. The sleep study revealed no REM sleep. My DTRs are brisk but not pathological. And other than these things, the only visible signs I have are tremors and eyes that don't always track together.
General neuros in the city all have their own little sub-specialties or personal interests. If I go that route, obviously, I'd like to choose the one that is going to be able to sort this out.
I've narrowed it down to maybe five and would appreciate any input on which would be most appropriate.
There's one who specializes in sleep disorders, and in particular, sleep disorders in PwMS. I could use some help with the sleep issues, but don't want to be viewed as chasing down an MS dx since everyone says this is not MS. So when I saw this, it sort of put this guy on the back burner.
There's the center at one university that has specialists in neuro-opth, neuro-acoustics, neuro-urology, and sleep disorders. But they're all different docs (the one neuro-opth is also a neuro that specializes in demyelinating disease and neuroimmunology). I have problems with all of these systems, but they wax and wane. Again, this is a place that specializes in MS and other demyelinating disease. Do I avoid them because of their specialty focus?
And then there is one that specializes in migraines/migraine research and dx migraines. He has another specialty in strokes and vascular disorders.
Other than that, there are the neurophysiologists and movement specialists. Many of them specialize in Parkinson's and genetic disorders like muscular dystrophy. Although, they might be able to pin things down with the patterns I have with the gripping muscle spasms and tremors.
And finally, there is the Mayo, which I'm trying to avoid because of the expense and travel required.
I'd be happy to answer any questions anyone might have to help narrow this down further. I'm still on the fence as to whether to pursue this further or not. Things being fairly quiet right now is making that a whole lot easier to do. In this case, I can just continue to see the neuroimmuno I've been seeing who has made the dx of complex migraines which explains everything but the bowel/bladder issues, and hope nothing more happens until they figure it out with time.
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