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my Neurologist sucks


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Alright, I went to see a Neurologist for seizure-like activity (simple partials) that were happening during sleep episodes (if you'd like, go to my "Sleep Dysphoria: Mystery Diagnosis" question in the Sleep Disorders board) and occassionally by themselves. Anyway, I saw my Neurologist for the first time a couple of months ago, and all he cared about was that my legs were weak (actually, all he would listen about was my weak legs, he didnt care about sh**), and one side being weaker than the other. My primary care doctor said my symptoms could be related to MS, and I wanted to talk about that. But all I said was "what about MS.." and he interrupted me and said "no, MRI fine". After that he didn't even listen to my symptoms, and ordered an ENG and a EEG.

Ugh...fine...

Two months later I go back for tests. During the ENG I have a sleep episode, so they called it quits and told me to lay on the bed. I layed on the bed and I was out. They did the whole EEG while I was sleeping (does that mean anything?). I only woke up twice. Once for about 7 seconds to see the flashing lights, and again for about 3 seconds for me to hyperventalate (in which I never did).

After the tests I go home, and get a phone call after a month. He talked to my dad! He didnt even talk to me and I'm an adult! But all he said about my test results was that the ENG said I had Vertigo (duh, I could have told you that) and that i needed physical therapy (which was denied by Tricare). He also went on saying that my EEG results "weren't necessarily abnormal". (What in the fu** does that mean?)

So now I don't know what to do. It was tooth and nail for a refferral to Tricare for a Neurologist, can I ask for a second opinion? Should I, or am I just being sensitive?

Twitch

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EEGs are kind of funny things. Or the results are, there are sooooo many forms of epilepsy the really specific wave patterns of most of them aren't defined and there's no real line between normal and abnormal.

So a result like "not neccessarily abnormal" is *normal* neuro talk, and is quite possibly a semi-specific outcome.

You could have a completely batshit EEG and still have a neuro say "well it COULD be epilepsy" or have a relatively normal one with just a hint of a specific wave and then have a doc be more certain of epilepsy.

There are lots of types of simple partials to have too. There will probably be people that read this that are wondering why you would want to get rid of simple partials if that's all you're having... lots of them are really nice and pleasant.

If you feel you need a second opinion then try to get one, without more info on what your experiencing I can't really imagine it but if it bothers you then sure...

Oh and if by chance it is seizuriness... wellbutrin is pretty evil in reference to seizures, did these things happen pre-wellbutrin? Anti-convulsants suck so if you can get away with changing AD's and have relief then that's possibly a nicer option (particularly since you have spoken before on the psychosis board about disorganised thinking and thought... disorganisation + anti-epileptic-drug = major spaz for months on end trust me)

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Wow, thanks for all the info Dan.

To answer your question, the episodes started before wellbutrin. But I'll talk to my Pdoc about it and see if there's something else I can try to be safe. It could be contributing, you never really know until you trial.

So you think my results were "normal"? That's neuro talk for you. I just have it questionable because we never dicussed seizures or epilepsy, and he was just an ass to begin with.

I get what you mean about not wanting to be on Anti Convulsants. I've heard the talk, and I'm not sure if my brain could handle it. I really just don't know though. The SPS's are not necessarily pleaseant during one of my episodes where vertigo, some kind of narcolepsy and vasovagal are attatched. But there no big deal when by themselves. I mean, I'm not being a baby and begging for them to stop. I just want to know, you know?

I am thinking about getting my results from my Neuro, and finding a second opinion along with a new EEG since I didn't really do what was necessary for me to do.

I really, really appreciate the advice. Especially since you know me and my disorganization problems ;) Thank you

Twitch

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I hate to say this, but your neuro might be getting the idea that it's "all in your mind". I'm not saying that it's in your mind, but I'm worried that your neuro might be getting that impression. That's often their most favorite way of dealing with the MI (at least per my experience).

Have you discussed neurological infectious disease with your doctor? Encephalitis and meningitis diseases are as common as dirt (or mosquitoes) in most of the US. If you have severe neck pain, fever, and/or any other symptom that feels like you've got the flu or something, then you might want to bring it up. (n.B. - encephalitis and meningitis aren't always acute/fatal -- there are chronic forms known... for example, in me.)

I wasn't proactive enough in my own care the past 2 years, and that's part of the reason why I now have sustained brain damage causing a syndrome similar to Parkinson's disease.

I'm not trying to scare you (or turn you into a hypochondriac), but obviously you should consider all possibilities.

And find out what "not necessarily abnormal" means. Generally, you can procure quite easily a copy of the interpretation (just go in person to the facility you had the MRI done at and ask). You can then have this sent to another neurologist (or better yet, a neuroradiologist) -- providing that Tricare will pay for a re-interpretation.

My GP gave me about the same reply with regard to my January '07 MRI, saying that there "may be mild abnormalities". He mailed me a copy of the report (he's quite compliant and receptive with me), and it turns out that the neuroradiologist on-site at the imaging facility felt that I'd lost a little brain tissue on the outer cortex as well as the inside (aka cisterna magna). Also, my neck's spinal cord got moderately atrophied somewhere in there. This is why I'm seeing a radio-diagnostic neurologist next month...

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A second opinion can't hurt, twitch, if your insurance gives you the otay. I did check out your post you mentioned in the sleep disorder section, and what you described, honestly, really doesn't sound like simple partial seizures to me. At least in my vaaaast experience (she says, tongue planted firmly in cheek.) Bear in mind, I'm only a year and a half into my DX. But I'm on a first-name basis with seizures. Have been for awhile, just didn't know it.

EEGs are a strange breed. Finicky, even. My first EEG report stated that it was "abnormal" with spikes in the right temporal area, indicating a predisposition to seizures. Did your neuro. tell you exactly why your EEG was, perhaps, abnormal? Or not necessarily so? EEGs don't pick up things that are going on deeeep within the recesses of our brains. And neuros can only really make an epilepsy DX based upon a number of factors and that includes the EEG, thorough family history, (no epilepsy. in my family,) taking the time to really REALLY talk to you and giving you a neuro. exam. My first guy spent a good hour with me. I say "first guy" cuz in the end he turned out to be a dick. Now I go to a Level 3/4 Epilepsy Center. Lessons learned. You're unhappy with your neuro....move on.

Anyway, if this dude is giving you a "Whatever" attitude and is being evasive...seek out someone who will take the time to listen You're the one who has to live with whatever is going on with yourself...do what needs to be done to get better!

Oh, and yes, taking AEDs are like eating a huge slice of Hell-Cake everyday. Avoid them at all costs, if you can.

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Oh, and yes, taking AEDs are like eating a huge slice of Hell-Cake everyday. Avoid them at all costs, if you can.

I don't know that I'd go so far as to say that. I actively appreciated Topamax for the several months it worked for me. I would still say it's the best thing I've ever taken, and I've tried a whole bunch of things. Trileptal wasn't so bad either, but it just didn't work well enough. I'll get back to you on Lamictal in a bit if I make it up to a reasonable dose. The only one that particularly sucked for me was Neurontin, and that was because I had rather weird and unusual side effects from it that almost no one does (as in none of my doctors had ever seen one of their patients react that way, so don't expect it to happen very often; more often than not, it just doesn't do anything at all if it doesn't work).

I definitely agree about seeing a neurologist who'll actually take the time to talk to you and listen to what you have to say and ask questions about things to find out as much as they need to know. I was lucky, and the first guy I saw is like that. He makes a point of telling everyone at their first appointment that the most important thing for him to be able to diagnose and treat things is to listen to what the patients have to say. If you're not seeing someone who agrees with that, they're doing you a disservice, because if all you have to go on is an EEG, you're missing a lot of relevant information. The experience of seizures and other weird neurological stuff can be highly subjective, but it's certainly possible to sort out what's going on by going through the details of what it's actually like for each person. EEGs and whatnot definitely can point you in the right direction and be a good sign of what might be going on, but they can easily miss stuff and can only measure a limited number of things in the first place. Very good idea to have them done, but very bad idea to rely on only those results.

And there's my rant about proper, professional neurological diagnosis and treatment. Heh.

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O.k., maybe I was a bit harsh with the whole "Hell-cake" bit. But if I didn't have to take AEDs (that aren't quite working...yet) I sure as heck wouldn't. Topa. isn't so bad, I guess, as long as I drink the equivalent of Niagra Falls in water. Lammie gave me migraines & essential tremors. Dilantin? Oy. We're still patching the holes in the walls I made falling into them. Keppra? I think this most recent, huge titration is what's making me one moody laydee. I hear vitamin B-6 helps. Or maybe shots of B-52s?

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I hear vitamin B-6 helps. Or maybe shots of B-52s?

I got me a pill, it's as big as a whale, and it's headin' on down, at the med shack. I got me a pillbox, it holds about 20, so hurry up and bring your copay money. The med shack is a little old place where we're all nuts together! Med shack, baby.

...or something.

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I hear vitamin B-6 helps. Or maybe shots of B-52s?

I got me a pill, it's as big as a whale, and it's headin' on down, at the med shack. I got me a pillbox, it holds about 20, so hurry up and bring your copay money. The med shack is a little old place where we're all nuts together! Med shack, baby.

...or something.

Ha ha! Thanx for the memories! I saw them a gajillion years ago at the Boston Music Hall...or was it the Orpheum (and are either still standing?)

As an aside, and I'm being completely honest here, I drove a Plymouth Satellite. (Sebring Plus). It was my first car. Lasted freshman thru senior year in college when it done blowed up a month after I graduated.

I'd say I drove that Plymouth Satellite faster than the speed of light, but it was only a V-6.

You can only go so fast in a V-6. I shoulda had a V-8.

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I saw them a gajillion years ago at the Boston Music Hall...or was it the Orpheum (and are either still standing?)

I've been to the Orpheum as recently as a few years ago, so it's still there last time I checked. I wasn't sure about what the Boston Music Hall was, so I looked it up, and apparently it was what the Orpheum used to be called. Heh. Almost entirely unrelated, it used to have the largest organ in the US in it, which has since been moved to Methuen. Completely coincidentally, I had already seen it before reading about that, since our old drummer was from Methuen and lived around the corner from it.

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I saw them a gajillion years ago at the Boston Music Hall...or was it the Orpheum (and are either still standing?)

I've been to the Orpheum as recently as a few years ago, so it's still there last time I checked. I wasn't sure about what the Boston Music Hall was, so I looked it up, and apparently it was what the Orpheum used to be called. Heh. Almost entirely unrelated, it used to have the largest organ in the US in it, which has since been moved to Methuen. Completely coincidentally, I had already seen it before reading about that, since our old drummer was from Methuen and lived around the corner from it.

...I'm having a six degrees of kevin bacon moment here...

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Fucking get a new neurologist if you can. The neurologist is serving you.

Oh, yeah. This post was supposed to be all about twitch, wasn't it? Sorry bout that. Got caught up in the B-52s. Meds make your mind wander a tad.

Bottom line....What she said. Fucking get a new neurologist if you can.

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