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sipa 11-16-2007 02:05 PM

Wow...I'm kinda pissed - Update: Neurologist seen!
 
I finally got my pcp to refer me to a neurologist. Appt is on Dec 7th. They told me to pick up my records from the vestibular rehab and ENT. So I did and read through them.

From 9/6/07

R Hallpike-Dix: positive right rotational nystagmus lasting 0-30 seconds, to pure downbeating slowing but persists >60 seconds. Subjective max dizziness while held in position.

L Hallpike-Dix: positive for downbeating nystagmus pattern persists >60 seconds. Subjective max dizziness while held in position.

Assessment: Pt presents with atypical BPPV, but will attempt to treat as right anterior canalithiasis, [b]however pt may have central causes as indicated by persistent downbeating nystagmus pattern bilaterally.[/b]


(emphasis mine)

Ok, so she discharged me a few weeks ago, told me to go back to my doctor, with NO mention of this to pass on to my pcp. I had to push my pcp to get a referral to the neurologist (she wanted to send me to an ENT again...) I'm not a doctor, but hell, this seems like an important little tidbit to share. ***. :mad:

Subs30 11-16-2007 02:46 PM

Re: Wow...I'm kinda pissed
 
[QUOTE=sipa;3310162]I finally got my pcp to refer me to a neurologist. Appt is on Dec 7th. They told me to pick up my records from the vestibular rehab and ENT. So I did and read through them.

From 9/6/07

R Hallpike-Dix: positive right rotational nystagmus lasting 0-30 seconds, to pure downbeating slowing but persists >60 seconds. Subjective max dizziness while held in position.

L Hallpike-Dix: positive for downbeating nystagmus pattern persists >60 seconds. Subjective max dizziness while held in position.

Assessment: Pt presents with atypical BPPV, but will attempt to treat as right anterior canalithiasis, [b]however pt may have central causes as indicated by persistent downbeating nystagmus pattern bilaterally.[/b]


(emphasis mine)

Ok, so she discharged me a few weeks ago, told me to go back to my doctor, with NO mention of this to pass on to my pcp. I had to push my pcp to get a referral to the neurologist (she wanted to send me to an ENT again...) I'm not a doctor, but hell, this seems like an important little tidbit to share. ***. :mad:[/QUOTE]

Hi

Yep its important(very)....needs to be checked out with a Neurologist!

Always get a copy of ur medical records/exams/tests---and transcripts---by law---they must provide them to u---may costs u some $$---but that way u know exactly what the results are/where....something to remember when u go to the Neurologist....

By-the-way had the same:

..." however pt may have central causes as indicated by persistent downbeating nystagmus pattern bilaterally"....

Saw the Neurologist who ruled out a "Central cause"....from MRI and further tests....

:cool:

charlotte67 11-16-2007 03:56 PM

Re: Wow...I'm kinda pissed
 
Yep, sounds very important..I am glad you followed up.

Hey Sipa...I am still walking...I think it is helping. How 'bout you.

sipa 11-16-2007 04:57 PM

Re: Wow...I'm kinda pissed
 
[QUOTE=Subs30;3310229]..." however pt may have central causes as indicated by persistent downbeating nystagmus pattern bilaterally"....

Saw the Neurologist who ruled out a "Central cause"....from MRI and further tests....[/QUOTE]

Thanks, Subs. That just made me feel a WHOLE lot better. I've been a complete emotional wreck for the past 2 hours.


Charlotte: I still do the walking although I haven't been able to every day like I promised myself I would. Appointments (work) in the late evening throw me off. I can't seem to make myself get to the gym if I get home at like 7, 8 pm. The other days I've been keeping it up, though. I feel so much better when I go!! How about you? Is it helping you any?


Edit: Oh yes, from now on I will ask for the records from every single dr's visit. Not going to have this happen again!!!!

charlotte67 11-16-2007 05:45 PM

Re: Wow...I'm kinda pissed
 
Sipa, I agree...It is good to get the records. I don't understand how they mention that you should get something checked out...then don't tell you? What bull...

I walk 30 mins everyday..but the weekends...well, that is hard. The family is all together..so I tend to enjoy those...and not do the treadmill. I exercise though those days...usually we all go for a walk. I do think it is helping. I think it is calming my eyes down a bit. I still have symptoms, but I believe it is helping.

Hey, what do you do for work....I think it is great you work 'till 7-8 pm at night with this crap. You are doing GREAT.

alexiwildchild 11-16-2007 09:21 PM

Re: Wow...I'm kinda pissed
 
wow...sorry to hear about THEIR incompetence with the situation...that sucks. what are your main symptoms as of lately? i feel you with the dr's..i have just reached my level of like i don't even want to go to anymore. my last doc's notes had that i had been taking valium...ummm...no, i took it once at the beginning and it did nothing so i didn't take it again. so the referral specialist was thinking i was on it for like 2 months or something haha! anyway, i hope you get some answers and relief soon, as with all of us!:)

sipa 11-16-2007 10:26 PM

Re: Wow...I'm kinda pissed
 
[QUOTE=charlotte67;3310439]I don't understand how they mention that you should get something checked out...then don't tell you? What bull...[/quote]

She didn't actually recommend I do anything.... which is worse. She discharged me and just said, well just go back to your doctor. Never mentioned this at all. So I told my doctor that I went to the balance center, was diagnosed with BPPV, but still had symptoms. So naturally she believed that everything was being taken care of and nothing much to worry about. Doh.

[quote]I walk 30 mins everyday..but the weekends...well, that is hard. The family is all together..so I tend to enjoy those...and not do the treadmill. I exercise though those days...usually we all go for a walk. I do think it is helping. I think it is calming my eyes down a bit. I still have symptoms, but I believe it is helping.[/quote]

I hear you lol. I think calming the eyes is a pretty good description. That's kinda what it seems to do for me too. I feel more relaxed.

[quote]Hey, what do you do for work....I think it is great you work 'till 7-8 pm at night with this crap. You are doing GREAT.[/QUOTE]

Well, I'm self-employed, financial adviser. Since all of this started I've stopped working by myself and pretty much only work with my husband now. It involves a LOT of driving around (going to see clients), and I just couldn't do it on my own anymore. I've been going on appointments no matter what, though, when I felt too horrible, I just took xanax. I don't remember much of those particular appointments... haha ;)


Alexi -

My symptoms are pretty similar to what most people here have. I feel ok on some days, other days I don't feel well - nauseous, slightly off-balance, foggy head type feeling, sometimes at night I get the floating thing. Plus I've been having recurrent BPPV symptoms. Once a month (but not this past month!), I get the real vertigo deal when lying on my right side. Last time it happened, I was able to clear it wiht the MEP on my own. The previous times I just waited for it to go away on its own.

I know what you mean about the doctor's notes. I read through everything my PT wrote down, and I could tell she was spinning things to fit what she wanted to say. :rolleyes:

alexiwildchild 11-16-2007 10:44 PM

Re: Wow...I'm kinda pissed
 
haha, yeah sipa...i have pretty much lost all faith in doctors over all this ordeal. i am so tired of going and just don't ever want to step foot into another office again...but i have two appts next week :mad: one to have some moles removed (i've had pre-melonoma ones previously) and then finally the ENG, rotary chair test results on friday---an entire MONTH after i had the tests initially done...ewww....no thanks...;) oh well, best of luck to you...couldn't remember if you had the BPPv or the crummy vision issues like me.

hang in there!

sipa 11-16-2007 11:11 PM

Re: Wow...I'm kinda pissed
 
haha, thanks, you too!

Results a month after the tests? Wow... lol, that's insane. You'd think that they realize that you have to live with this stuff in between. But that doesn't seem to be a major concern...

After seeing all these doctors, I'm beginning to think that most of em just don't give a damn. They do their standard tests and are done with it. My friend's aunt got diagnosed with cervical cancer recently. By the time that doctor found it, it had grown to the size of a grapefruit, and he couldn't understand why her ob-gyn didn't detect it when she went for a checkup several months earlier. Now she has 6 months to live.... It's absolutely sickening. :mad:

charlotte67 11-17-2007 01:40 PM

Re: Wow...I'm kinda pissed
 
Well...sipa...I can understand the challenges of your job. Prior to staying home with the baby I did pharmaceutical sales...very fast paced and nuts. I don't know what I would have done with this head crap.

I am glad your husband is supportive, mine is also. Thank God.

I can't believe that story about the cancer...what a HUGE mistake. I am sorry to hear it.

My symptoms now are low level dizzys 24/7, woozy/lightheaded in stores/busy places...and eye tracking issues and flickering. Everything is much less...but still there. I do everything I use to plus. I just feel off doing it....make sense?

Keep that chin up, you are doing great. I am 39 years old and feel 90 some days...hahahah.

Alex..I totally understand that feeling of no more doctors. They don't get how terrible this stuff can really make you feel. I love it when they say, "hey, youmust feel normal now...you are back to work"!! Yeah, like we can't work, or raise our kids...we push through.

sipa 11-18-2007 11:15 AM

Re: Wow...I'm kinda pissed
 
[QUOTE=charlotte67;3311338]I do everything I use to plus. I just feel off doing it....make sense?[/QUOTE]

Makes a lot of sense. I can do everything (some things not so willingly,) but I hardly ever feel just plain normal doing anything. It's very rare that I completely forget about this stuff, it's always in the back of my mind.

sipa 11-27-2007 08:49 PM

Re: Wow...I'm kinda pissed
 
Update:

So I felt lousy last Wednesday and since I met my health ins deductible, I figured, what the hell, I might as well go to the doctor, maybe she'll take things more seriously if she sees for herself how horrible I'm feeling. She did. Promptly called the neurologist and moved the appointment from Dec 7th to today. Yay me!

So far I have a very good feeling about this neurologist. It's a different one I was supposed to see because of the short notice but that may have worked out for the better. He's fairly young so perhaps the grind didn't rob him of his reason for becoming a doctor yet. He spent about an hour with me, doing all kinds of funny little tests (like having me say "nananana" and "kekekeke" LOL!), quick vision and peripheral vision checks, looking at my eyes, lots of reflex tests all over my body, poking me with a toothpick all over (!), bending my ankles and toes, hand-eye coordination, marching in place with eyes closed and of course the Hallpike which was negative which I told him it would be, I dont have BPPV symptoms right now. He did some different things during it, however, having me follow his finger with my eyes while still in the lying down position.

In short I felt like he actually took his time to check me out. I pretty much passed all his tests except the marching in place with eyes closed - I ended up turning about 45 degrees in the process, which apparently is a sign of a peripheral problem. His verdict: it's peripheral, not central. He'll get an MRI approved by my health ins anyway and get that scheduled. See him again in 2 weeks. Keep doing the VRTs, according to him those are the only way to make this go away.

Oh, he was a bit concerned about the B12 deficiency. Said it's possible that if this has been going on for a long time, the nerve got damaged. I'm getting B12 (complex actually) shots now. We'll see if it helps, though from everything I've read, neurological damage through B12 deficiency is not reversible. Heh.

charlotte67 11-28-2007 06:15 AM

Re: Wow...I'm kinda pissed
 
I am so glad this guy really checked you out and you feel he heard you. It is so important to start peeling away the layers of this illness. Does he think the b12 shots might help the symptoms too?

What did he think about vestibular therapy?

I am so excited for you. I think you are doing the right things.

sipa 11-28-2007 10:13 AM

Re: Wow...I'm kinda pissed
 
He says the B12 shots might help if that has been part of the issue. I'm not sure there's any way to know because we don't know how long the deficiency has been going on.

Re Vest therapy: yes, he believes in it. Said the only way to get rid of the sudden quick spins I randomly get while walking about is by doing the exercises. He asked if I wanted him to send me to their program but I told him my ins only covers 12 therapy sessions and I'd already used up 10. I might talk to him about it again next visit but I'm really not sure there's much more I can learn. I know what exercises there are and how to do them.

I really liked him. Of course I've never seen a neurologist, maybe they're all like this! But I enjoyed not getting ushered out of the room after a 5 min examination and told I'm basically fine, lol.

charlotte67 11-28-2007 02:14 PM

Re: Wow...I'm kinda pissed
 
Hey Sipa...they are not all like this at all...Mine looked at me...said I had a small flickeriing in my eyes...and if it was worse he would send me to a support group? Yeah, thanks...350$ later.

Funny thing, he actually is familiar with the dizzy clinic that has helped me...

Don't know why he never told me about it?

Ahhh, well.


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