How thorough is your neurologist?

[Dignan]

General question for anyone.. Does your neuro do all the tests you feel need to be done to ensure everything is okay with your seizures or with the drugs you take? Are you satisfied with what he/she does for you?

Does your neuro routinely look at in depth thyroid (TSH, T4, T3) and liver tests, as well as bone density, and hormones, and anything else to keep an eye on side effects or how the AEDs are affecting your body?

Just wondered, because my guy is supposed to be good, but he doesn't do all that stuff and acts like he wouldn't know what to test for anyway, which I find strange for someone who prescribes these drugs.. I'd like to know if his approach is fairly standard or if other docs are more thorough.

 

[gowings83]

I feel the same with mine Dignam. She seems totally dumbfounded on what to do about some things. I get constant headaches, ones that normal tylenol won't get rid of. I've only found 1 thing that works and she won't give it to me, some hippie "I don't believe in that stuff" crap. Also really sharp pains in random spots on my head, they hurt like hell for like 30 seconds and go away. Imagine pliers around your finger and somebody stomping on them. I get dizzy when I stand up, usually to the point were all I see is black and almost fall over. Needless to say I'm very familiar with my walls. I jerk a lot too, my legs rarely stop moving. Then there is me feeling like I am wiggling about yet I'm not moving. Too bad she is the only one I can see. I would love to see the doctor at the university here, he has done some amazing things with the brain. He was even featured in that show In Through The Wormhole hosted by Morgan Freeman. Needless to say I think she is a poor excuse especially when it comes to patient care, I can barely see her too given she is only here 1 weekend a month.

 

[sassi]

Mine is good about ordering EEG's and asking me questions and making sure I tell her answers, making me feel bad if I don't do the things she's told me to do (i.e., taking my multivitamins, eating right, getting the right amount of sleep, not drinking caffeine, etc) and making sure that I'm not having any breakthrough symptoms. She hasn't ordered any blood tests and to be fair I would refuse them based on the fact I can't afford them. I'm barely able to afford the EEG's as it is and this second one is going to break the bank along with my ER trip. Overall, I'm pleased with her thus far. She's been doing good with me and I haven't had a complaint yet. The doctor over her I wouldn't want to see because I don't believe he's as thorough.

 

[Endless]

Here's a link to the Professional information on drugs.com for Keppra:

http://www.drugs.com/pro/keppra.html

The odds of a change in blood count (white, red, lymphocyte, etc.) are very small. That's probably why he's not taking blood tests for that. Here's what drugs.com had to say:

Adults
Minor, but statistically significant, decreases compared to placebo in total mean RBC count (0.03 x 106/mm3), mean hemoglobin (0.09 g/dL), and mean hematocrit (0.38%), were seen in Keppra-treated patients in controlled trials.
A total of 3.2% of treated and 1.8% of placebo patients had at least one possibly significant (≤2.8 × 109/L) decreased WBC, and 2.4% of treated and 1.4% of placebo patients had at least one possibly significant (≤1.0 × 109/L) decreased neutrophil count. Of the treated patients with a low neutrophil count, all but one rose towards or to baseline with continued treatment. No patient was discontinued secondary to low neutrophil counts.

I didn't see anything in there about an effect on thyroid, liver, bone, hormones.

You can always ask for the tests, especially from your PCP at your annual exam. Just explain your concerns. I understand your reasons for wanting them. Keppra has been out awhile but it's still a relatively new drug. And not all adverse reactions show up in the package insert.

 

[BrandiBrat]

My neurologist works in conjunction with my primary car physician. I go to my primary for labs and he monitors my health and then they exchange info when anything doesn't add up.

 

[Dignan]

I don't think my PCP and my neuro have ever spoken or even know one another. I am the go between.

 

[Fedup]

Dignan

I agree with you on this question, my neurologist is supposed to be good so were the others but none of them ever asked me if I wanted tests done or did these tests which I feel should be routine for me, so now I look for these tests to be done myself.

 

[Dignan]

I don't mind looking up the tests and requesting them myself, its when my PCP doesn't understand why, and admits that it is all a little over his head, while the neuro says its not his area, so he won't do it, that leaves me mad.

It's GETTING someone to order the tests that is a problem.

 

[BrandiBrat]

What a drag!! All I have to do is call my PCP and say 'I don't feel good' and he orders all the labs and I'm on Medicaid (I'm self employed but low income) so I really consider myself very fortunate. Can you choose a different PCP that has an interest in neurological disorders? When I was picking a Dr. I researched their interests and what they studied and found one that had an interest in Epilepsy even though he wasn't formally trained.

 

[sjconner]

My neuro orders the only the tests that I need. I also see an oncologist every three months. They are in the same hospital and are on the same computer system so they can share information. Fewer blood draws - YEA!!! He is the only doctor that takes the time to listen. He makes time, even if he is behind. He is interested in everything. His office is the only place where I don't feel like a lab rat or a seventh grade science fair project.

 

[charmschool]

I actually moved neurologists. When I first started having them, we didn't know where to start. So we found a random neurologist and went there- big mistake. While she knew what E was her specialty was strokes. Even my EEG wasn't done correctly- the nurse was in there eating and answering cell phone calls! Of course it didn't come out accurate. She put me on AEDs and my seizures increased. Bottom line- I am now seeing an epileptologist and he is extremely thorough! Complete EEG with a proper diagnosis (FINALLY- a year later). Always checking blood levels of meds to make sure that my body is taking them well, checking vitamins, other blood tests that might show the effects, changing other meds that might be interfering (ie BC).
You have to go with your gut- if you don't think you are getting the best care, try to change drs!

 

[sassi]

The nurse that works at the front desk is horrible at translating questions, however. She totally misheard what I was trying to ask my Neurologist and I'm waiting until Monday to call again when I'm less angry so I don't end up chewing someone out over it. People don't listen correctly!

But what charmschool says, always go with your gut. If something doesn't feel right about your doctor then change it! It's your health and well being and you need to do what's right for you. Don't keep sticking around if it's not working out!