Lectured by Neuro..frustruated.. alot!!

[Jan4you]

OK I understand that filling out disabilty forms IS a nightmare. But I bought a car and they offered disability insurance. I thought since I drive for a living I could get into an accident..well..got this feeling I should take the insurance. Who knew that 6 months later I would be diagnosed with MS AND Epilepsy. The neuro is really not wanting to fill this form out..and I am paying for this disablilty insurance..aren't I entitled to this benefit??

But what really ticks me off is my neuro called and said, among other things, "You need to cooperate." He heard via his office staff ( as HE canceled my follow up appt since being in the hospital) that I was having more partials. Prior he mentioned he may have to up the dose of Neurontin. So he blamed me for not doing it. He only mentioned he might raise the dose.. he never told me to.. gee.. I would've immediately.

Also when he announced to me in Feb his diagnoses were Epilepsy (temporal lobe with lesions on both lobes) and MS in one breath.. adding, "you are not a candidate for brain surgery..what????? Cuz I have lesions on BOTH temporal lobes. Now he is saying that is the MS lesions. Gosh I remember him saying that to me as it affected brain surgery.. ya don't forget such things.

Ok. I did tell him I was struggling with accepting the MS DX..as the last MS specialist told me I do not have MS (he monitored me for 4 years) So this Neuro told me all about his experience/neuro training and again reiterated that fact IN the hospital. So why wouln't I trust his diagnosis??

Now he wants a 2nd opinion (for MS) and wants me to see an epileptologist sp? for a hospital video EEG. Seems my insurance does not have a clinic for either. Turns out with MY research my insurance does have someone and a clinic. In fact its the doc who read my EEG.

He won't fill out the disability forms as permanently disabled. OK.. I get it.

I understand, but with my complex partials.. I NEVER know I am making serious mistakes at work. If it weren't for my patients..then later my secretaries or supervisor...I never knew of the mistakes I was making. I would write the wrong infor..bill the wrong patient.. miss entire asessments or answers as I woudl "blank out". To me..Its unethical and dangerous. I could never do my job again.. or ANY job knowing I would be making mistakes. Sometimes though not often, I would find my own stupid mistakes.. but not always. He knows this. So how would I EVER know if I am having complex partials or they are under control?? How??

I can no longer drive so my present job will be terminated once they learn.

I feel he is casting me aside.. I am glad to get real experts..but then why did he try to convince me HE could treat me? I even ask him today, Didn't you think I had MS.. and Epilepsy?? He said in his "opinion" yes.

He started me on Trileptal and I had a serious allergic reaction. He knows with my other medical problems..rare kidney disorder..and Dysautonomia.. giving me ANY meds will be a problem.. a serious problem.

Whaaa whaaa whaa.. just wanted to whine a little..sorry guys

I really want to just cry

Jan

 

[Endless]

Oh, Jan.

I'm so sorry, it sounds like he's not treating you with much respect. You deserve better.

It's a GOOD thing he referred you to an epi. You can dump him, and just see the MS specialist and the epi. My humble opinion is that an epi is a much better qualified person to handle your meds, and your situation. How long before you get in to see the epi?

 

[Jan4you]

Hahahaa.. well aren't YOU sweet for responding.. again thanks.

Well I found an epileptologist IN my insurance plan, the one who read my EEG. Her office is closer too. AND she works at a hospital that does the 3 day EEGS.

Funny how he wanted me to trust HIS diagnosing skills..then pawns me off to both an MS specialist (I found) and an E doc (I found).

You're right.. then I will not have to SEE him again. I did have him on a pedestal for taking me on with such a complex complicating history.

Thanks for YOUR response

Jan

 

[Jan4you]

Hahahaa.. well aren't YOU sweet for responding.. again thanks.

Well I found an epileptologist IN my insurance plan, the one who read my EEG. Her office is closer too. AND she works at a hospital that does the 3 day EEGS.

Funny how he wanted me to trust HIS diagnosing skills..then pawns me off to both an MS specialist (I found) and an E doc (I found).

You're right.. then I will not have to SEE him again. I did have him on a pedestal for taking me on with such a complex complicating history.

Thanks for YOUR response

Jan

P. S.. I STILL feel insulted that he told me to cooperate..when I have been.

 

[Nakamova]

This is a blessing -- you get to shuck this nasty neuro and find a better one!

I hate the term "non-compliant". Doctors throw it around when patients question their instructions or disagree with their conclusions. I know you weren't being non-compliant, or uncooperative, but clearly your nasty neuro is too arrogant and condescending to care. Good riddance.

 

[Jan4you]

Thanks Nakamova. I had him on a pedastal for taking me with ALL my problems and challenging issues. I think he is overwhelmed. He IS a nice guy. Got him at the end of a long week and then he has to fill out another disability form???? I know.. I know.

So Monday I will call this lady epileptologist who has a hospital that does not only video EEGs but surgery. I asked him and he said NO, there is no hospital that does this with my insurance. I work for the corporation that he is a provider for so i MUST use corp docs..hospital..pharmacies etc.

I am awaiting to hear from the MS doc..another saga.

Thanks for responding..it means a lot

Jan

 

[Endless]

Jan,

Don't listen to him on the insurance - call your insurance office and ask THEM. Most insurance will pre-approve medical visits or costs or doctors. His main line of work isn't insurance so he definitely could be wrong.

 

[valeriedl]

I am simaliar to you but not completly.

I have problems on both sides of my brain, so I couldn't have surgery. I'm actually glad because as you said I can't imagine someone cutting into my brain!

Every other visit to my neuro I would see his assistant, I'm not sure of her actual title. I think she is a nurse practioner. But she would accuse me of all sorts of things as to why I was still having my sezs. I wasn't taking my meds or I was taking them wrong. I told my neuro that I didn't want to see her any more. When I came for my visits I wanted to see him!

I have a VNS implant which has helped alot with my sezs. I'm still having them and I'm still taking meds but the frequency of the sezs and how bad they are aren't nearly as bad as they were.

I was having them several times a week and often a few in one day. Now with the VNS I am down to maybe one a month, but sometimes it is more. How bad they are and how long they last are much better too. My neuro is still trying to find the right adjustment for my VNS and hoping to get me off of most of my meds too.

Find a dr that will listen to what you have to say and not TELL you what you are doing wrong (which is what his asst was doing). This has helped me out alot.