neurologist appointment
so, today i had my first experience with a neurologist. my doctor sent me because she was concerned about the brain fog related problems found (well verified really, i knew they were happening, i just didn't know how bad) in my neuro-psychologists testing.
the neuro-psych had given me the impression that there was nothing i could do about my cognitive problems - other than learn some coping skills & make sure any future jobs fit safely within my energy window & cognitive abilities and come back in a year to re-test. so when my doc decided to send me to a neurologist i was kinda worried. was there something specific in the neuro-psych's report that she was worried about? or any particular disease, other than cfids & fms that my pattern of results & reports made her think of?
i was, thankfully, too exhausted to worry much yesterday. this morning i got myself nice & worked up though - yippie ;P
so anyway, the neurologist asked me lots of questions, read through my list of current symptoms, looked over the notes and the neuro-psych report my doc had forwarded & listened to my heart & lungs and checked my reflexes & balance. he didn't do much cognitive testing because the neuro-psych had done 4-5 hours worth. he seemed shocked at how little my first two years worth of doctors had been willing to explore & try to treat my symptoms. he didn't understand why i hadn't been referred to him, a reuhmy, or any physical therapy before now.
then he talked with me about what he thought. he said he didn't think we were seeing the early stages of anything scary like ms or alzheimers (can you start to see that already at 32? wow!). he said that everything he found, everything in my notes, in the other doctors reports and lab tests sounds consistent with cfids/fms diagnosis in his experience. the in his experience part really got my attention. not only has he delt with other cfids & fibro patients, he actually believes its real and has plans for treating my symptoms (though he did warn me that at this time treating the symptoms is the best he can do, which i already knew).
he said that if we're being thorough in ruling out other possible diseases there are a few more tests we should probably do. he'd like to start me off with a sleep study at duke (god i hope my insurance covers that, need to check). he says we'll do that first because of my sleep troubles from before i got sick (most of which were asthma, allergy & sinus related & are greatly improved) and because people with cfids & fibro often have sleep issues & a sleep study is, in his opinion, a good place to start (i'm still in shock that he has a plan & normal steps he takes with cfids/fibro).
after that he said we might consider an eeg and an (oh hell what was it *runs to get notes*...) an mslt (have to look that one up). but he didn't expect to find anything, so he wasn't sure he wanted to waste my time & money on those yet.
he said, after the sleep study, we may want to look into neurontin. he said my symptoms & circumstances remind him a lot of another cfids patient he had who responded very well to this drug. but he said its only a suggestion and i should research it thoroughly before i decide (oh my god, a doctor who believes i get to decide what meds i put in my body!) and there may be other things we can do if we don't try it. he actually said he was glad i wasn't on the pile of meds & supplements i started off on (i was expecting the lecture about not wanting to get better cause i wasn't trying every drug out there). he also mentioned the possibility of some alzheimers meds that are thought to be effective with cognitive problems, but said those would be a last resort in case everything else we do doesn't work.
at the very end he made a point of saying again that he thought the diagnosis of cfids & fms was correct for me. he said that while depression & anxiety do cause cognitive problems, the severity of mine couldn't possibly be explained by either of those alone (and a big so there! :P goes out to the first two doctors i saw after getting sick). and he told me my doc will be referring me to a rheumatologist for thte joint pain isues.
this is one of the first times i've walked out of a doctors office feeling hopeful & more happy than when i went in. my doc is doing a wonderful job picking specialists for me to see, i think i'm going to buy her some flowers.
the neuro-psych had given me the impression that there was nothing i could do about my cognitive problems - other than learn some coping skills & make sure any future jobs fit safely within my energy window & cognitive abilities and come back in a year to re-test. so when my doc decided to send me to a neurologist i was kinda worried. was there something specific in the neuro-psych's report that she was worried about? or any particular disease, other than cfids & fms that my pattern of results & reports made her think of?
i was, thankfully, too exhausted to worry much yesterday. this morning i got myself nice & worked up though - yippie ;P
so anyway, the neurologist asked me lots of questions, read through my list of current symptoms, looked over the notes and the neuro-psych report my doc had forwarded & listened to my heart & lungs and checked my reflexes & balance. he didn't do much cognitive testing because the neuro-psych had done 4-5 hours worth. he seemed shocked at how little my first two years worth of doctors had been willing to explore & try to treat my symptoms. he didn't understand why i hadn't been referred to him, a reuhmy, or any physical therapy before now.
then he talked with me about what he thought. he said he didn't think we were seeing the early stages of anything scary like ms or alzheimers (can you start to see that already at 32? wow!). he said that everything he found, everything in my notes, in the other doctors reports and lab tests sounds consistent with cfids/fms diagnosis in his experience. the in his experience part really got my attention. not only has he delt with other cfids & fibro patients, he actually believes its real and has plans for treating my symptoms (though he did warn me that at this time treating the symptoms is the best he can do, which i already knew).
he said that if we're being thorough in ruling out other possible diseases there are a few more tests we should probably do. he'd like to start me off with a sleep study at duke (god i hope my insurance covers that, need to check). he says we'll do that first because of my sleep troubles from before i got sick (most of which were asthma, allergy & sinus related & are greatly improved) and because people with cfids & fibro often have sleep issues & a sleep study is, in his opinion, a good place to start (i'm still in shock that he has a plan & normal steps he takes with cfids/fibro).
after that he said we might consider an eeg and an (oh hell what was it *runs to get notes*...) an mslt (have to look that one up). but he didn't expect to find anything, so he wasn't sure he wanted to waste my time & money on those yet.
he said, after the sleep study, we may want to look into neurontin. he said my symptoms & circumstances remind him a lot of another cfids patient he had who responded very well to this drug. but he said its only a suggestion and i should research it thoroughly before i decide (oh my god, a doctor who believes i get to decide what meds i put in my body!) and there may be other things we can do if we don't try it. he actually said he was glad i wasn't on the pile of meds & supplements i started off on (i was expecting the lecture about not wanting to get better cause i wasn't trying every drug out there). he also mentioned the possibility of some alzheimers meds that are thought to be effective with cognitive problems, but said those would be a last resort in case everything else we do doesn't work.
at the very end he made a point of saying again that he thought the diagnosis of cfids & fms was correct for me. he said that while depression & anxiety do cause cognitive problems, the severity of mine couldn't possibly be explained by either of those alone (and a big so there! :P goes out to the first two doctors i saw after getting sick). and he told me my doc will be referring me to a rheumatologist for thte joint pain isues.
this is one of the first times i've walked out of a doctors office feeling hopeful & more happy than when i went in. my doc is doing a wonderful job picking specialists for me to see, i think i'm going to buy her some flowers.