Aa
Yeah, Neuro says I'm "intriguing"!!
I went to my neuro follow up this morning with trepidation. I know that I "failed" the sleep study. The assistant that I spoke with on Wednesday made it sound that the doctor was going to give up on my case. So I was nervous and preparing to be upset.
(I'm going to write everything down here - also for my reference later - so this may take several posts.)
The neuro greeted me and while walking back to his office he said that he's been thinking about me all week. I asked if that was good. He said well not good in one sense but that I was very intriguing medically. There are no easy answers and he keeps reviewing my test results and my file. (Yeah!, he's not dropping me!)
He said that I had the WORST sleep study he had ever seen. Usually at home people have a 95% sleep efficiency and in the sleep study lab people will have around a 75% sleep efficiency or maybe better. I however had ONLY A 37% sleep efficiency. He couldn't believe it! And since I didn't fall asleep later in the day during the MSLT (nap tests) that just made it even more strange. He said that by definition that it would be a dx for insominia but that he doesn't believe I have that. He said that in the old days a sleep study would be for 4 or 5 nights and the first night all data was excluded to give people time to acclimate to having all the wires on. Then of course the Evil Insurance Companies refused to pay for more than one night. So one night it is. However my test was "bad" enough that they can't even rule out sleep apnea so there will probably be another test in the future, with me on a sleep medication, so they can at least rule out sleep apnea.
I then mentioned that as an interesting side point I had the 2nd worst migraine ever Wed morning. (I also mentioned that I am working with another neuro on my migraines and keeping a migraine diary.) And the night of the sleep study - Monday night through Tuesday day was when a very strong weather front rolled in. With very high winds and major changes in barometric pressure. My migraine neuro and I know that severe barometric pressure changes are likely to trigger migraines for me. So I'm wondering now if my body senses the weather change and doesn't sleep which contributes to the migraines. (I do recall in the spring when the migraines were at their worst ever that I had many sleepless nights.) So the sleep study may actually help me to better pinpoint idicators that a migraine is likely. (And if this works, I'll change my profession to weather forecaster!) Anyways, new neuro found this all intriguing. Immediately when I started to say "storm" he jumped in with the barometric pressure stuff. And he's not offended that I'm seeing another neuro.
To be continued.
(I'm going to write everything down here - also for my reference later - so this may take several posts.)
The neuro greeted me and while walking back to his office he said that he's been thinking about me all week. I asked if that was good. He said well not good in one sense but that I was very intriguing medically. There are no easy answers and he keeps reviewing my test results and my file. (Yeah!, he's not dropping me!)
He said that I had the WORST sleep study he had ever seen. Usually at home people have a 95% sleep efficiency and in the sleep study lab people will have around a 75% sleep efficiency or maybe better. I however had ONLY A 37% sleep efficiency. He couldn't believe it! And since I didn't fall asleep later in the day during the MSLT (nap tests) that just made it even more strange. He said that by definition that it would be a dx for insominia but that he doesn't believe I have that. He said that in the old days a sleep study would be for 4 or 5 nights and the first night all data was excluded to give people time to acclimate to having all the wires on. Then of course the Evil Insurance Companies refused to pay for more than one night. So one night it is. However my test was "bad" enough that they can't even rule out sleep apnea so there will probably be another test in the future, with me on a sleep medication, so they can at least rule out sleep apnea.
I then mentioned that as an interesting side point I had the 2nd worst migraine ever Wed morning. (I also mentioned that I am working with another neuro on my migraines and keeping a migraine diary.) And the night of the sleep study - Monday night through Tuesday day was when a very strong weather front rolled in. With very high winds and major changes in barometric pressure. My migraine neuro and I know that severe barometric pressure changes are likely to trigger migraines for me. So I'm wondering now if my body senses the weather change and doesn't sleep which contributes to the migraines. (I do recall in the spring when the migraines were at their worst ever that I had many sleepless nights.) So the sleep study may actually help me to better pinpoint idicators that a migraine is likely. (And if this works, I'll change my profession to weather forecaster!) Anyways, new neuro found this all intriguing. Immediately when I started to say "storm" he jumped in with the barometric pressure stuff. And he's not offended that I'm seeing another neuro.
To be continued.
I agree with your comments. I'm hoping the evoked potenials of my lower extremities gives indication of something - anything! Since he also seems commited to the thoraic MRI I'm going to ask that we include another brain MRI also. I'm looking to bringing up the MS issue that his buddy the neurosurgeon thinks I have. However, I've also experienced the complete shut down of migraine neuro when I brought up MS. So I'm walking that fine line of letting the doctor "discover" that on his own while "guiding" him in that direction. This neuro does believe that I have cataplexy. From my research on that - I totally agree. (My research also says that where cataplexy is independent from narcolepsy it is generally caused by a lesion.) And the possibility of surgery on the C6 disk remains in the picture. So I will definitely ask for the brain MRI so I can be "comforted" that it is not MS before I undergo the C6 operation.
The focus on cataplexy and narcolepsy is helping though because it is focusing on my #1 issue right now which is fatigue aka excessive daytime drowsiness. So solving or at least improving this will go a long way to improving my quality of life.
The focus on cataplexy and narcolepsy is helping though because it is focusing on my #1 issue right now which is fatigue aka excessive daytime drowsiness. So solving or at least improving this will go a long way to improving my quality of life.
I am really glad that he is looking at you so thoroughly and thoughtfully. I really am. But, I'm afraid he might miss the forest for the trees. If he truly thinks that MS is out of the picture, and if that is what you have, then he will continue eternally to be iintrigued by how a young woman can have so many neurological problems.
The 0.7T MRI of your brain was hopelessly inadequate for visualizing MS lesions. I suspect that it was not done using the MS MRI Protocol either, since the very machine itself does not meet the standards.
So, im my mind, you have not even gotten an adequate initial brain MRI.
I, too, think you are in good hands, because he IS taking you and your problems very seriously. I just hope that somewhere along the line you do get a better MRI. And that he will consider that MS can present with a negative MRI - even with a good machine. That said, I don't know that it is MS that you have. You certainly fit the parameters.
Quix
The 0.7T MRI of your brain was hopelessly inadequate for visualizing MS lesions. I suspect that it was not done using the MS MRI Protocol either, since the very machine itself does not meet the standards.
So, im my mind, you have not even gotten an adequate initial brain MRI.
I, too, think you are in good hands, because he IS taking you and your problems very seriously. I just hope that somewhere along the line you do get a better MRI. And that he will consider that MS can present with a negative MRI - even with a good machine. That said, I don't know that it is MS that you have. You certainly fit the parameters.
Quix
ok, so this all sounds good!!!! I seriously hope that he sticks with you and keeps looking!!!
((hugs))
~Sunnytoday~
((hugs))
~Sunnytoday~
continuing ....
So that brought up the possible need for a MRI of my thoracic spine. Haven't had one of those yet.
He's not willing yet to repeat the MRI of my brain. (Only one so far was a .7T MRI without contrast)
The next thing I brought up was my request for physical therapy. He was agreeing to it and starting to write out the prescription when he asked just a few more questions. (This is more to the point that he was going to the airport in 2 1/2 hours for a flight but each time he asked me a question my answers were surprising him and taking him down another path. He really finds my symptoms intriguing!)
I explained that I need to work on my coordination and balance - not my back. I explained about the physical therapy in Fall 2000 when the PT discovered that if I closed my eyes I fell over. The PT then spent several months teaching me to use my eyes to compensate. And I mentioned that now I can't even walk on a treadmill at .5 miles per hour. How in summer 2004 I was walking one hour a day on the treadmill at 2.7 mph and reading a book and watching tv. Now, I can't read a book on the treadmill. If I take my hands off the handrails to turn the page I loose my balance. I can't watch tv unless I am holding on. If I look up at the tv, I fall. So I found a website called "treadmilluse" put the ******* at the end. It said then to slow your speed down. Hence I am now at .5 mph on a zero incline and on a good day I can sometimes get to .7 mph but I can't maintain it.
Wow, did that intrigue him. So he's decided not go with the physical therapy for now. He said he didn't want to "put a bandaid" on the problem, he wanted a dx. Yeah the PT would help but it wouldn't solve the underlying problem. So he's holding off on the PT. (I agree with this. I am starting to believe that the PT I had in 2000 is throwing off some test results because I am very good at compensating for the lack of sensation in my feet/legs.)
So he is more convinced about the need for a thoraic MRI.
And he has ordered an Evoked Potentials of my legs/feet.
Then as he was walking me out and giving me more samples of Provigil he said - wow, he's never met anyone so young with so many different problems! (Yeah, he finds me intriguing!)
I had to bite my tongue to keep from saying - that's because I have multiple lesions in my brain !!!! and hence MS - I just have shy lesions that won't appear in a MRI.
He's working my symptoms at his pace/style. That is ok with me. I believe he will stick with me and keep working until he has answers to all my symptoms. So no problems solved but I believe I am in good hands.
So that brought up the possible need for a MRI of my thoracic spine. Haven't had one of those yet.
He's not willing yet to repeat the MRI of my brain. (Only one so far was a .7T MRI without contrast)
The next thing I brought up was my request for physical therapy. He was agreeing to it and starting to write out the prescription when he asked just a few more questions. (This is more to the point that he was going to the airport in 2 1/2 hours for a flight but each time he asked me a question my answers were surprising him and taking him down another path. He really finds my symptoms intriguing!)
I explained that I need to work on my coordination and balance - not my back. I explained about the physical therapy in Fall 2000 when the PT discovered that if I closed my eyes I fell over. The PT then spent several months teaching me to use my eyes to compensate. And I mentioned that now I can't even walk on a treadmill at .5 miles per hour. How in summer 2004 I was walking one hour a day on the treadmill at 2.7 mph and reading a book and watching tv. Now, I can't read a book on the treadmill. If I take my hands off the handrails to turn the page I loose my balance. I can't watch tv unless I am holding on. If I look up at the tv, I fall. So I found a website called "treadmilluse" put the ******* at the end. It said then to slow your speed down. Hence I am now at .5 mph on a zero incline and on a good day I can sometimes get to .7 mph but I can't maintain it.
Wow, did that intrigue him. So he's decided not go with the physical therapy for now. He said he didn't want to "put a bandaid" on the problem, he wanted a dx. Yeah the PT would help but it wouldn't solve the underlying problem. So he's holding off on the PT. (I agree with this. I am starting to believe that the PT I had in 2000 is throwing off some test results because I am very good at compensating for the lack of sensation in my feet/legs.)
So he is more convinced about the need for a thoraic MRI.
And he has ordered an Evoked Potentials of my legs/feet.
Then as he was walking me out and giving me more samples of Provigil he said - wow, he's never met anyone so young with so many different problems! (Yeah, he finds me intriguing!)
I had to bite my tongue to keep from saying - that's because I have multiple lesions in my brain !!!! and hence MS - I just have shy lesions that won't appear in a MRI.
He's working my symptoms at his pace/style. That is ok with me. I believe he will stick with me and keep working until he has answers to all my symptoms. So no problems solved but I believe I am in good hands.
Just a comment about your sleep study findings. Mine were equally bad. I hardly slept at all, and my deep phases were non-existent. I have no breathing or obstruction problems, I don't snore, I don't grind my teeth, etc., etc. (all of which I already knew). I just have had terrible problems sleeping, and don't know whether another neurological disorder is involved. I used to get migraines but have had none in recent years.
My sleep doctor did give me a script for amitriptyline, which has helped me a great deal. Some nights I sleep well, some I don't. No caffeine, no alcohol, no anything I know of to foul up the works. Still, I'm better than I was about 6 months ago.
Good luck to you in getting to the bottom of everything going on with you. Your neuro sounds great!
ess
My sleep doctor did give me a script for amitriptyline, which has helped me a great deal. Some nights I sleep well, some I don't. No caffeine, no alcohol, no anything I know of to foul up the works. Still, I'm better than I was about 6 months ago.
Good luck to you in getting to the bottom of everything going on with you. Your neuro sounds great!
ess
Continuing ....
Then we talked more about cataplexy and my sleep paralysis. I mentioned that during the sleep test I had noticed that several times as I was trying to drift off to sleep that I wanted to swollow but that I couldn't. That always startles me so I fight hard to 'wake back up" and be able to swollow. He said that is classic cataplexy. (I just hadn't thought to mention these episodes, just the major ones in the morning.) But these episodes when I am trying to fall asleep are classic.
So then we talked about the next step. He's going on vacation - (I almost got the impression he was willing to forgo his vacation to work on my case!) I had the heart palpitations on 200mg of Provigil and a "rabbit on speed" reaction to Vyvanese. He had asked me during the EMG test of my legs last week if I had experienced heart problems on other medications. My brain couldn't function well at the time. However I later recalled that working with my endocrinologist on my thyroid problem that we have had to lower my synthroid dose because of heart palpatations. He thought that was very interesting.
He's agreed to let me try the Provigil at the 100mg dose. It doesn't work all day for me but is better than nothing. Much better than nothing and we'll see how that works.
He's thinking of having me see a cardiologist. He has other patients who work with cardiologists because medications cause the heart palpitations and the medicines are necessary so for a few unlucky patients you have to be on heart medicines so that you can tolerate the CNS medicines.
And this will continue ....
Then we talked more about cataplexy and my sleep paralysis. I mentioned that during the sleep test I had noticed that several times as I was trying to drift off to sleep that I wanted to swollow but that I couldn't. That always startles me so I fight hard to 'wake back up" and be able to swollow. He said that is classic cataplexy. (I just hadn't thought to mention these episodes, just the major ones in the morning.) But these episodes when I am trying to fall asleep are classic.
So then we talked about the next step. He's going on vacation - (I almost got the impression he was willing to forgo his vacation to work on my case!) I had the heart palpitations on 200mg of Provigil and a "rabbit on speed" reaction to Vyvanese. He had asked me during the EMG test of my legs last week if I had experienced heart problems on other medications. My brain couldn't function well at the time. However I later recalled that working with my endocrinologist on my thyroid problem that we have had to lower my synthroid dose because of heart palpatations. He thought that was very interesting.
He's agreed to let me try the Provigil at the 100mg dose. It doesn't work all day for me but is better than nothing. Much better than nothing and we'll see how that works.
He's thinking of having me see a cardiologist. He has other patients who work with cardiologists because medications cause the heart palpitations and the medicines are necessary so for a few unlucky patients you have to be on heart medicines so that you can tolerate the CNS medicines.
And this will continue ....
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