Aa
First Neuro Visit kind of mixed feelings
To all,
I'm sure you're curious about my first visit so here goes.
First off he was impressed that I had printed out a symptom list and a timeline of my symptoms, said he wished more of his patients were this proactive, makes his work so much easier and saves a lot of questions.
He's officially diagnosed me with epilepsy first off, also said many of my symptoms could be related to side effects from Dilantin (my anti-seizure medication, although some of my symptoms started before I was prescribed Dilantin), not sure if he overlooked that or just assumed.
Anyways, he's scheduling me for a new EEG to try and elicit a seizure, because all of my other EEG's haven't shown any abnormalities, he wants to see since I've now had several since that EEG was done if there are any changes.
Plus he's going to change my medication, discussed using Vimpat (new on market, found out he'll have to get prior authorization from my part d provider before prescribing) not sure about this, because it's used for partial onset seizures ( I have had generalized as well as partial) He did ask if I experienced any aura or anything that triggered one, I said not that I could recall, I think I stated in my timeline that I had a feeling of extreme fatigue wash over me, just before I had my very first seizure,
Plans on scheduling another MRI in May, per recommendation of radiologist, he is concerned with my weight loss, and asked me to contact my PCP for colonoscopy (I'm scheduled for 1 May 14 10:45 am)
I asked about the 6mm high signal in my MRI and he said it could be related to smoking, the dilantin, as well as the other suggestions implied by the radiologist, he's going to look over my MRI scan more closely, so that when I return for my next visit, we can go over in detail his impressions.
I know one thing I need to do for my next visit is have all of my most important questions written down, because for the life of me many of the questions I wanted to ask, I just couldn't get them out.
I'm a bit confused, uncertain and apprehensive about where to go from here. Not sure what to think of my Neurologist, one thing he said was he specializes in epilepsy not sure of that's a good thing or a bad thing, kind of makes me think his mind will be closed to other possibilities.
What are your opinions?
Thanks
Suzie :)
I'm sure you're curious about my first visit so here goes.
First off he was impressed that I had printed out a symptom list and a timeline of my symptoms, said he wished more of his patients were this proactive, makes his work so much easier and saves a lot of questions.
He's officially diagnosed me with epilepsy first off, also said many of my symptoms could be related to side effects from Dilantin (my anti-seizure medication, although some of my symptoms started before I was prescribed Dilantin), not sure if he overlooked that or just assumed.
Anyways, he's scheduling me for a new EEG to try and elicit a seizure, because all of my other EEG's haven't shown any abnormalities, he wants to see since I've now had several since that EEG was done if there are any changes.
Plus he's going to change my medication, discussed using Vimpat (new on market, found out he'll have to get prior authorization from my part d provider before prescribing) not sure about this, because it's used for partial onset seizures ( I have had generalized as well as partial) He did ask if I experienced any aura or anything that triggered one, I said not that I could recall, I think I stated in my timeline that I had a feeling of extreme fatigue wash over me, just before I had my very first seizure,
Plans on scheduling another MRI in May, per recommendation of radiologist, he is concerned with my weight loss, and asked me to contact my PCP for colonoscopy (I'm scheduled for 1 May 14 10:45 am)
I asked about the 6mm high signal in my MRI and he said it could be related to smoking, the dilantin, as well as the other suggestions implied by the radiologist, he's going to look over my MRI scan more closely, so that when I return for my next visit, we can go over in detail his impressions.
I know one thing I need to do for my next visit is have all of my most important questions written down, because for the life of me many of the questions I wanted to ask, I just couldn't get them out.
I'm a bit confused, uncertain and apprehensive about where to go from here. Not sure what to think of my Neurologist, one thing he said was he specializes in epilepsy not sure of that's a good thing or a bad thing, kind of makes me think his mind will be closed to other possibilities.
What are your opinions?
Thanks
Suzie :)
The EEG has to be scheduled, I have to call into the office this week to get it done. He would have done one that day if he had an opening for one, they don't May schedule until last week of April.
I did get my next office visit it's the 18th of May. Plus I've got my appointment for my colonoscopy for May 14th at 10:45 am. Maybe we'll have that report as well when I go in for the next appointment.
I did get my next office visit it's the 18th of May. Plus I've got my appointment for my colonoscopy for May 14th at 10:45 am. Maybe we'll have that report as well when I go in for the next appointment.
Hmmm, yes, I don't think I've ever seen a neuro and come away feeling sorted. There's never a straight answer, it seems to me. The confusion part is unsettling. To be honest, I read both versions of your timeline and events etc.and I don't think it's you that's confused. You were really clear and concise.
I wonder if it would be possible for you to get a second opinion, ask around for other people's recommendations? I'm with Theresa on this - and I can't imagine that doctors who are substance abusers are effective. There was a report this weekend about all the scores of thousands of doctors and dentists in the UK who are hooked on drugs and alcohol. The mind boggles - and I'm wondering if this might have anything to do with the abysmal treatment some of us get....how can your mind possibly be clear enough if you're taking heavy duty meds or stuff like cocaine?Let's hope your guy is well and truly rehabbed.
When's the EEG? Is there any reason the discharges would change much?
hugs
samxx
I wonder if it would be possible for you to get a second opinion, ask around for other people's recommendations? I'm with Theresa on this - and I can't imagine that doctors who are substance abusers are effective. There was a report this weekend about all the scores of thousands of doctors and dentists in the UK who are hooked on drugs and alcohol. The mind boggles - and I'm wondering if this might have anything to do with the abysmal treatment some of us get....how can your mind possibly be clear enough if you're taking heavy duty meds or stuff like cocaine?Let's hope your guy is well and truly rehabbed.
When's the EEG? Is there any reason the discharges would change much?
hugs
samxx
I must admit that the fact the the doc is a former addict is a bit of a warning sign to me...Also because your friend had prior negative experiences with him...And that he does not look outside the box...
I am not sure that this may be the right person for you...I am just being honest....If it were me I would try to find another doc....
Writing your questions down is a very good thing to do.I am sorry and I should have mentioned that before.
My father is on dilantin.At his last neuro visit we discussed trying something new. But after the neuro went over the other options the Dilantin seemed to be the lesser evil. The doc was working on the" If it aint broke dont fix it theory"...So my dads still taking the dilantin...
I do feel that anyone experiencing weirdness should always see a Rheumy at some point. There are so many Rheumatic diseases that mimic neurological diseases or cause neurological problems.So it is always to get checked for things like Lupus and the other nasties. Rheumys always look for the needle in the haystack so to speak....
What really matters is how you felt about the doc. If you are comfortable with him then you should stay.But if you are the least bit concerned then I would strongly suggest finding a new one.......
Please take care and keep us posted....
Theresa
I am not sure that this may be the right person for you...I am just being honest....If it were me I would try to find another doc....
Writing your questions down is a very good thing to do.I am sorry and I should have mentioned that before.
My father is on dilantin.At his last neuro visit we discussed trying something new. But after the neuro went over the other options the Dilantin seemed to be the lesser evil. The doc was working on the" If it aint broke dont fix it theory"...So my dads still taking the dilantin...
I do feel that anyone experiencing weirdness should always see a Rheumy at some point. There are so many Rheumatic diseases that mimic neurological diseases or cause neurological problems.So it is always to get checked for things like Lupus and the other nasties. Rheumys always look for the needle in the haystack so to speak....
What really matters is how you felt about the doc. If you are comfortable with him then you should stay.But if you are the least bit concerned then I would strongly suggest finding a new one.......
Please take care and keep us posted....
Theresa
Well I tried to go in with an open mind, because my best friend whose has several children now grown with various neurological/autoimmune disorders had experience with this Dr years ago and wasn't really happy that I got him, said he was addicted to cocaine, though my visiting nurse said she heard he'd gone through rehab.
But since I'm not exactly an expert in regards to cocaine addictions, I felt I couldn't judge that. But she also stated he wasn't one that was willing to think outside-the-box so to speak. But who knows? I figured I'd at least give him a chance, I know there probably were questions I should have asked, but at the time I couldn't really think of any. I did ask him about the empty sella and what it meant, and he said the same thing that I've found on the internet, and the same comment that it's nothing to worry about.
Hard to say if he actually took me seriously, I didn't come right out and ask anything in regards to MS or any other neurological illness, wanted to see where he led the conversation.
Also, he wasn't really very forward in regards to the 6mm signal that was reported on the MRI, I know he wanted to have a chance to carefully look over the images and scheduled an EEG to see what activity is going on in my brain and if it's changed since the EEG I had in August 2007.
I know one thing I need to discuss with him is about this new anti seizure med he's talked about putting me on after the next visit, it's called Vimpat, because he'll have to get pre-authorization from insurance that's providing my part d coverage before prescribing it. And also what I've read about it, is that it's used basically for partial or partial complex seizures. While I do have these, I also have generalized seizures and there's nothing stating that it's effective for these.
In regards to seeing a rheumatologist no I haven't seen one, not because I haven't wanted to or that my doctor hasn't wanted me to, just finding one close enough that transportation isn't an issue.
Did he listen? Well he appeared to listen, plus he had me do some tests walking, following finger, etc. Luckily when I stood to do the walking my legs started their uncontrollable shaking, which happens at times so he saw that symptom that I described, and I was experiencing my hand tremors as well, so maybe he'll make a note of that in his clinical notes.
He did ask my friend who went with me who actually witnessed a seizure to describe it to him, that's one thing I can't describe, I can describe those frozen in time ones though, (you know the ones where you can see and hear everything that's going on around you, but you can't speak or move) Ok, I think I've answered your questions, and don't be sorry about asking them, they help me to sort things out.
Suzie :)
But since I'm not exactly an expert in regards to cocaine addictions, I felt I couldn't judge that. But she also stated he wasn't one that was willing to think outside-the-box so to speak. But who knows? I figured I'd at least give him a chance, I know there probably were questions I should have asked, but at the time I couldn't really think of any. I did ask him about the empty sella and what it meant, and he said the same thing that I've found on the internet, and the same comment that it's nothing to worry about.
Hard to say if he actually took me seriously, I didn't come right out and ask anything in regards to MS or any other neurological illness, wanted to see where he led the conversation.
Also, he wasn't really very forward in regards to the 6mm signal that was reported on the MRI, I know he wanted to have a chance to carefully look over the images and scheduled an EEG to see what activity is going on in my brain and if it's changed since the EEG I had in August 2007.
I know one thing I need to discuss with him is about this new anti seizure med he's talked about putting me on after the next visit, it's called Vimpat, because he'll have to get pre-authorization from insurance that's providing my part d coverage before prescribing it. And also what I've read about it, is that it's used basically for partial or partial complex seizures. While I do have these, I also have generalized seizures and there's nothing stating that it's effective for these.
In regards to seeing a rheumatologist no I haven't seen one, not because I haven't wanted to or that my doctor hasn't wanted me to, just finding one close enough that transportation isn't an issue.
Did he listen? Well he appeared to listen, plus he had me do some tests walking, following finger, etc. Luckily when I stood to do the walking my legs started their uncontrollable shaking, which happens at times so he saw that symptom that I described, and I was experiencing my hand tremors as well, so maybe he'll make a note of that in his clinical notes.
He did ask my friend who went with me who actually witnessed a seizure to describe it to him, that's one thing I can't describe, I can describe those frozen in time ones though, (you know the ones where you can see and hear everything that's going on around you, but you can't speak or move) Ok, I think I've answered your questions, and don't be sorry about asking them, they help me to sort things out.
Suzie :)
Suzie,
Well it seems like the doc is on top of things...
But like you said you are still a bit confused. I have to admit that I am always more confused after I leave an appointment than I was going into it.I thing alot of us have felt that at one point or another.I think it's because it is just information overload....
How do you feel about the neuro as a person? Did you feel that he listened and took you seriously?Like you said he may be closed minded to other possibillities....
Have you ever seen a Rheumatologists?
Sorry with all the questions just curious.....
Take care, Theresa
Well it seems like the doc is on top of things...
But like you said you are still a bit confused. I have to admit that I am always more confused after I leave an appointment than I was going into it.I thing alot of us have felt that at one point or another.I think it's because it is just information overload....
How do you feel about the neuro as a person? Did you feel that he listened and took you seriously?Like you said he may be closed minded to other possibillities....
Have you ever seen a Rheumatologists?
Sorry with all the questions just curious.....
Take care, Theresa
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