[hippiechick]

Hi, everyone....I have Shy-Drager's disease, which I'm told is very rare and my neurologist tells me that there's "nothing he can do" about it. So for the past several months I've passed out anywhere from 3-10 times daily. My husband has been on vacation for the past 2 weeks and that's been nice; he's used to seeing me pass out and it's usually no big deal to either of us because it happens so often that we're used to it. However, although I've told my primary care doc and she didn't have much to say about it a couple of weeks ago, I was in my ophthalmologist's office a couple of days ago and it happened there. She hadn't seen it before and just totally freaked out. I don't remember much about it but she did want to call an ambulance to take me to the ER. I refused because, since it's such a frequent occurence, there was no point in it. And my pcp was on vacation so I just came home....poor doc was really scared. I guess I can see her point but it's really not anything to be that worried about. My husband will be back to work next week and I'll be alone again and it'll be happening with me by myself again. It's just that I guess others (besides my friends) aren't used to seeing it. Sorry it scared her so much. Maybe now docs will listen more. Even my neuro doesn't get that worked up about it. I don't know if there's really nothing that can be done about it or not. I wish that I could believe him but I'm not certain that I do. My old neuro left the practice without any explanation and I haven't been able to find him; I absolutely loved and trusted him. This one is only a D.O. and I, personally don't trust them. I just wish I could find the right neuro for me - one who I can truly trust and one I feel who has my best interest at heart. And one who doesn't always say that there's "nothing we can do".....I believe that there's always something that can be done. And don't we have to keep our beliefs/trust/hopes/faith up in order to keep on going????

[Judy2]

Hi hippiechick!

I'm not familiar with your problem, but it sure doesn't seem normal to me that you pass out so often. Doesn't that mean your blood pressure drops? There has to be medicine to fix that! You mentioned your neuro is a DO? I may be wrong, but I thought a neurologist had to be an MD before specializing. If I were in your shoes, I'd keep hunting for a new neuro and looking for some answers!!!

You don't drive, do you? If you passed out at certain times, it could be very dangerous! When you're home alone, bad things could happen too. Please keep searching. Having MS, I've discovered that these days we pretty much have to advocate for ourselves. The internet is a great place for information. Sometimes my neuro hasn't heard about things I tell him since he deals with many neurological problems, not just MS.

Don't feel badly about changing doctors either. It's our (the patient's) right to do so. Sometimes there's a personality clash, etc., but if a so-called neurologist told me to go home, there was nothing he/she could do, I'd definitely look for a new one!!!!

Take care and good luck..........

[Doodle bug7]

Hello Hippechick, Are you on any medication?
I was on Methadone for quite some time. I could be doing anything and I would Fade out ( as my son calls it). I don't know for sure how long my Naps lasted
but I think it was just a few minutes. I certainly wouldn't drive. I would drop things right and left, fell many times and turned my recliner over with me in it.
Be persistent and remember that the Doc works for you. Have you got on the
internet and research your condition? There is a wealth of info out there.
Take care and keep on, keepin on. So sorry for your problem. Don't let this
nap condition rule your life. There are answers out there and you have to find them. truely a believer, Doodle bug7
and let this Nap condition rule your life