UPDATE - Appt with Sleep Neuro

[Madalot]

I think this doctor is my last hope for solving this puzzle of why I seem have such disrupted sleep and resulting debilitating daytime fatigue. I am crossing my fingers and toes that he has some kind of insight (or brainstorm) that everyone else has missed.

He has all my records from my 3 sleep studies (plus I have copies AND the DVD from my last one) and I have overnight pulse reports AND ventilator downloads from the last few days (and some from a month ago when I was originally scheduled to see him).

Wish me luck.

[Pad A Cheek]

Maddy,

I wish you the very best luck for this appointment. I pray the doctor will have an insight that has not been realized before for your treatment.
Take care, and let us know how it goes.

Karen

[robysue]

best of luck Maddie. Knocking on wood that this doc will have useful ideas for you.

[momofthree]

Mad,

Fingers crossed and prayers being said! Let us know how it goes.

[BlackSpinner]

Good luck Maddy! I hope he is intrigued and fascinated and can help with some insights.

[jnk]

ReeeeeeeessssssMmmmmmeeeeeeeeedddddd

[DoriC]

Hoping you come back with some encouraging news!!

[howkim]

{{{{{{{{{{Maddie}}}}}}}}}}

::fingers crossed::

[msradar65]

fingers, toes and tails crossed here. I hope you get answers!

[Mary Z]

I don't think there is such a thing as a specific doctor being a "last hope". I know how much you've been through, been reading your posts for a long time. I'm sure it will be very discouraging if he doesn't have any answers, but don't give up hope. Please let us know as soon as you can how the visit went. Good luck.

[chunkyfrog]

I am praying your visit will be fruitful and satisfying.

[Slinky]

I was too late to wish you good luck this morning, Maddie. But I'm sure waiting w/baited breath to hear how the appointment went!!!!!

[Muse-Inc]

Ah Maddie, I hope it was a great visit full of promise for help!

[robysue]

Maddie,

Just wondering how the appointment with the sleep neuro went.

And hoping you are getting a decent night's sleep without all the nasty wakes ....

[Madalot]

Just wondering how the appointment with the sleep neuro went.

And hoping you are getting a decent night's sleep without all the nasty wakes ....

I'm sorry I haven't updated. I know there are a lot of you that want to know and care about the outcome. I also know that there are some that are probably going to be angry at how this turned out. Maybe that's why I didn't post sooner, just not up to dealing with it. But it's not fair since everyone has been so helpful, kind and supportive - so here it comes.

The sleep neurologist was fully prepared, having read all the documentation from my pulmonologist and sleep studies and speaking to ALL my other neurologists. I had recent downloads from my ventilator and overnight pulse ox reports, which he took and reviewed before talking with me. He and his Resident listened to what I had to say and asked a lot of questions. At one point I said "I know you all are so busy" and the response was "We're going to take as much time as we need so don't worry about that."

He was unable to review the raw data from my last study as that lab uses Sandman and this university does not. They attempted to review it (I had a copy of the DVD with me) but simply could not access it.

In essence - I like him. He obviously knows sleep medicine AND neuromuscular diseases, and took a lot of time to review my situation and talk to my other doctors. Based on all that, he has come to the following conclusions:

Leg movements: from the reports, he is NOT convinced that leg movements are a problem or causing significant awakenings/arousals. Regardless, we discussed that I have already tried Requip, Mirapex and Sinemet -- none of which had any effect on the daytime fatigue (which is my chief complaint).

He does NOT want to put me through any more sleep studies. He doesn't feel that any information he would get would be worth the extra expense, trouble and inconvenience it would cause me.

The respiratory issues I have at night ARE significant (probably muscle weakness from my disease, with some OSA thrown in for fun) but are being treated effectively by the ventilator at the current settings (S/T AVAPS). He was adamant about the ventilator, saying "You need it. It's treating that problem effectively and you must continue using it every time you sleep."

He agrees that something, probably increasing pressure being one thing, IS disrupting my sleep, thus causing so many disruptions that I have excessive daytime fatigue. He agrees that sleeping as much as I do during the day is a problem, and since we cannot change the treatment I get (ventilator), we have to find a way to solve the daytime fatigue.

He has given me Nuvigil to treat the daytime fatigue (I know SleepingUgly will be very happy about this - ) I took my first dose of it Wednesday. And how did that go?

Well, it certainly did work at keeping me awake, but I had this weird sensation of my body putting on boxing gloves and saying something like "Okay, fine. First you put mestinon in here and now you're putting Nuvigil -- we'll just see about that!" and a fight ensued all day between my body trying to shut down for sleep and the medications fighting to keep me awake -- and brain going "WTF???" not being able to make a decision at all about how it would go. The body finally won out around 4pm and I took a short nap before having to get up to help with dinner.

I went to bed earlier than usual Wednesday night but woke up 30 minutes later feeling like I was going to get sick. I had a very restless night, being awake a lot, not feeling well overall and just uncomfortable (my leg is hurting badly again, especially if I lay on my left side) and I woke up around 4am and couldn't go back to sleep, so I finally gave up and got up at 5.

I figure that I need to give all these meds a chance and see if things improve and/or settle down.

There's nothing more I can do.