doctors do they really understand?

[thornton8000]

Hey all ltns

I made sure to get the new neuros notes from my last 2 visits and everything i read shocked and appalled me.

He thinks im faking or malingering (for some other gain) or its somatization, he sent me to a neuropysch doc who deal with PNES cases and im still waiting on getting his notes, but from everything i got from my meetings with him is he wants me to change neuros again and go somewhere better.

He believes that i have seizures not just PNES, and also a few other med issues that tests cannot prove. I've been called a complex case since i was born. I had febrile seizures (the neuro thinks im lying about them as well), and even when i had strep or other should be easy to figure out issues they never could the test have always come back normal.
Had a 10.5 hour veeg with 2 simples and some tremors and they never showed up on the eeg and the couldnt see them but i had PVC's on the ECG they had on my chest, but he didnt tell me about that either.

Am i alone in the doctors cannot ever figure out whats wrong with me?

he also thinks i may have a conversion disorder due to PNES also. (lost on that one)

On his notes he also put things on there that never happened, and couldnt get facts straight either (my bike accident in 95 he put 99) (said ive been to 2-3 neuros when i told him that ive seen 2 prior neuros) ( said he asked questions that he never asked about)
And i had a spinal tape and got the horrid migraine after it had an appointment with him the day after. He comes into the room im laying on the table hurting with a migraine and then after its done i force myself to get up and walk (he puts "migraine" and then gets up and walks away no issues) when it was really a fight to even move that day.

sorry for thaqt rant but need to know if im alone in this battle and I feel nuts since the shrink and neuropyschologist believe and know i have these issues but the neurologist doesnt.

Im on 2000mg of keppra daily total and he wants me to stop that as it may be causing depression.

Thanks for thoughts and input.

Mike

 

[Fedup]

No doctors do not understand or realise what we are going through on a daily basis. They have no problem in saying you are a lair.

 

[thornton8000]

agree fedup or that its all in my head and the worst part is that they say im faking and doing so to try and get disability out of it, like i tell them do you think i want to live life in pain, fall, walk like im drunk, have vision and speech issues and cog issues? just to name a few and they still think im faking it even tho I have many ppl that see my daily struggle.

mike

 

[Fedup]

Trust me none of it is in your head and it is not possible to fake it. As you said do they think you want to live like this.

 

[jyearta]

I can't stand it when these Dr. talk/act like this.

My Neur. (NO. 7) is good, except she wants to,change my meds. so that I don't have any break throughs.
I told her in a perfect world, that would be my wish. I,told that I have read on this forum where people have surg. on dif. meds. and they still have break throughs.

 

[thornton8000]

jyearta, i hear ya im going to be going to a level 4 eliplesy clinic in march to get yet another opinion, and then after a few visits that doc will refer me to a diff neuro that specializes in my other probable med issues that cant be explained

mike

 

[Cint]

I,told that I have read on this forum where people have surg. on dif. meds. and they still have break throughs.

I am one of those folks. The lobectomy didn't work. Neither did 11 drugs so now I will be having my 3rd VNS surgery some time this spring after having a break-through seizure and totaling my car. I'm also on a new drug, Potiga, which is making me very anxious. And after I had the Lobectomy, I went into a severe depression and none of the docs understood depression and E at the time, nor did they understand women's hormonal issues and E.

Mike, IMO, doctors don't understand E and use PNES as a diagnosis, rather than looking for the real issues. I would say it is time for you to find an epileptologist, someone who specializes in epilepsy, since you've had it since you were a child. And Keppra can/does bring on depression. Hopefully you can try something else. Hope you can find a new doctor. One who knows what they are talking about and doesn't feed you a bunch of hogwash!

 

[thornton8000]

ty cint
i had an epileptologist hated her had another on edidnt like him getting a new one at this level 4 E clinic and he comes by good recommendation from my neruopysch doc whom i trust, so im holding out for good things in march and then hopefully after that ill get a much better neuro

mike

 

[Cint]

I hope you find a good epileptologist at this level 4 E clinic. Keeping my fingers crossed.

 

[thornton8000]

ty cint as am i also always hoping the next one is better than the last

mike

 

[Dignan]

I'm with you brother. Getting hold of your medical records and reading what these guys write can be a real eye opener. Sounds like you definitely need to fire that doc.

Unfortunately, in my case I've seen two other neuros and didn't find them to be much better. They both knew and like my original neuro and read his notes and said sounded right to them, without doing any other research on their own.

It's pathetic really. I'd love to find a neuro who has actually dealt with seizures and the drugs themselves or has a loved one who deals with it, as I really think that might make some differerence in their understanding towards patients.

Trust yourself and your instincts and Good Luck! :rock:

 

[huskymom]

It is amazing the differences in doctors. My first Neuro was always kind of lost. Even though I had two EEG's showing seizure activity. That is when I went to the University of Chicago and met with an Epileptologist. She has been great, but one of her fellow specialist looked over my week long video EEg and told me that I was just having "spells". All the activity that I was showing during that week on the video was not showing up on the tracings. I was so confused. Then my doctor came in and said that she didn't agree with him, but was not sure what was happening. Now this is where she earned her wings.....she came back in that night and went over all the tracings and came to my room and said that yes, there was seizure activity, but it was deep down. She sat with me and answered all my questions and enforced her diagnosis while repremanding her associate. Hard to believe! There are some good ones out there, I hope that you are able to find one too!

 

[thornton8000]

ty all ((to all))
its sad that they seen to give alot of us the run aroundand dont want to fully help but im not one to quit and will giving the med community heck till they can finally help me, and give me a solid answer with the full proof of whats going on.

have a wonderful morning my friends,

Mike

 

[Maisy]

No doctors do not understand, I ALWAYS open my discharge letters before I pass them onto my GP first time GP said why you opened I shrugged said I have a right too read this, on my last one they said I wasn't incontinent in hospital yet I was four times, ive also found out that they lied aboutr my CT today they said it was perfectly normal, yet now ive found out it was inconclusive and they did find something but not sure what!, hope you get it sorted good luck!!

 

[thornton8000]

Maisy,
Sure sounds like me Ive had many MRI's and CT's and been told they all say the same thing nothing is wrong, but when comparing them to others online that show "things" i see similaritys (cant spell lol) so I'm trying to find a radiologist i can trust to reread them and make sure whats really going on, but here in MN USA we need a stronger MRI machine than what we have to be able to really tell whats going on with my brain (its been confirmed there is on ein there lol)

and TY for the replys its good knowing im not alone in this back and forth and to know that the docs here are not the only ones who dont understand.

Mike

 

[jyearta]

I USED to be of the mind that the DR. was right...He knew what is best...

NOW I will ask on this forum and this has given the help that I was seeking from my Dr.

If I still have questions I go and speak with pharm. and have gotten a lot of help there also.

I no longer take what the Dr. says as the gospel.

As Fedup said ...go by what your body is telling you....

 

[LJ-Bain]

I think that some Dr.s have totally lost their sense of empathy. I think that they don't always see patients as people...just as part of their job and when a case comes up that cannot be solved quickly they lose their patience. I am sure that some Dr.s throw up their hands and say, whatever, let someone else deal with this one. Plus, I wonder when do they write up their records? Right afterwards? Days later? They must not intentionally fudge their records but how can they remember everything especially when they may not be really listening to you in the first place during the appointment?

I'm glad you have a neuropsych you can trust.

Your journey has not been an easy one.
I had to laugh at the conversion disorder from psychogenic seizures?? HA! What a vicious circle.
They paint us into a corner sometimes. A catch 22. Irony in it's evilest form.
Keep on giving the med community heck.
This level 4 E clinic might just be the answer for you! Here's hoping!

 

[Nakamova]

It sucks that you've had such a insensitive neurologist. Epilepsy (or any neurological issue) is hard enough without the doctors being dismissive, or rude, or incompetent.
There's a new book out: "When Doctors Don't Listen: How to Avoid Misdiagnoses and Unnecessary Tests". When it hits the library, I'm going to give it a read. The authors were at a local bookstore this evening, but unfortunately I couldn't make it.

 

[thornton8000]

thanks naka,
this isnt the 1st or will it sadly be the last and tomorrow is a big stress day so hopefully things go smooth even tho for many hours i'll be under stress that will prob be a big trigger.

Thanks

mike

 

[MuayThaiFighter]

It can be so easy for a Dr. to just lie right to your face, but express what they really think in their notes. Which they assume you won't read, because everyone is a dumbass unless they have a Phd I guess. Medical Jargon is used to confuse people about basic illness, and self awareness. So your neurologist sounds like an asshole, no other way to put it. If a specific Doc doesn't see you as a money sink or see's a complex case they will put you in the Psycho-somatic dumping grounds. Its ok for them to do this I guess, the hospitals don't defend the patient. Though countless people get diagnosed with psychogenic seizures, only to have the diagnosis switched when someone FINALLY pulls their head out of their ass. This being said, if someone has psychogenic seizures, goes through the process of dealing with that, and they still continues having seizures, whats next? But until then we are at the mercy of some bad Drs, until you find a really great Neuro who listens to you. I'm sure a good one is bound to come along.