Today I went into see a neurologist at my Rheum. Dr.'s request. He wants a lumbar punture (spinal tap) and apparently neuros are the only ones who do this. I chose this neuro based on the fact that he was who I was supposed to see regarding seizures I started having around six months ago. Call me crazy, but I thought neuros were fairly well rounded in the field of the brain. This guy even did his fellowship at Harvard. Well folks, that means nothing! I couldn't have been more caught off guard by someone if a child came up and slapped me in a mall. I brought along the list of illnesses sited by my last doctor's visit. He looked at it, set it down (I'm sure it's in a trash can now) and said, "I do seizures, that's pretty much it." In hindsite, I should have left then. Reduce the stress on me and the power play for him. Then, as I explained the seizure (briefly, he demanded), he told me that he didn't think I had seizures, he thought I had narcolepsy - the fall asleep anywhere disease. In my life, I've fallen asleep in inappropriate places twice and both were in the backseat of my parents' car when I was very ill! I looked up the disease, it doesn't fit. Not even close. Partial Complex Epilepsy, yes, perfect fit. My original diagnosis. Now he wants five different tests done. I scheduled them today but will cancel tomorrow. This is bologna! I want a second opinion and the spinal tap can wait. I've survived this long, I'll make a few more months. Oh, and he laughed when I told him my Rheum wanted to talk with him. Sorry to vent, but I actually feel violated by this disturbing man. Lupus, the illness and even more -- the diagnosis, have been the hardest roads I've had to walk and every now and again I feel like I've fallen down a sewer pipe! Well, this time, I'm crawling out, showering off, and finding a different road!
Sounds like you're doing the right thing. Remember there are caring neuros out there. This o e was obviously on an ego trip or having a really bad day. Watch out and take care of yourself
i wouldnot only never see him again......
but also talk to your rhuemy.
your rhuemy may never refer another paitent to him.
co-operation between doctorsis paramount to good care.
they need to know what each other is doing.
i have refused to go to a certain doctor.....
because he was above the need to comunicate.
your bill - - my money, my way.
if you want to give me a second bill,.........
Sad to say but what your neuro said is true of many big city doctors. I know at the medical center in Houston each neuro specializes in different things. I had to go to one for seizures, one to be checked for MS and another to do some other CNS testing. In smaller areas they tend to be more generalized.
You do need to let your other doctor know so he will explain it better to his patients. Sorry it was so frustrating
Success is not final, failure is not fatal: it is the courage to continue that counts.
I'd cancel the appt as well.
I have narcolepsy. Believe me, falling asleep in the back seat of your parents' car is not considered inappropriate. Falling asleep while driving, OTOH, is inappropriate.
Let this so-called "seizure expert" treat someone else. Find an unassuming doctor who takes the time to listen and examine you and read your records, one who does as requested by your rheumy.
Best of luck.
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Thank you for your support. I really prayed on it and I plan to go with my intense gut feeling -- cancel out! It's that feeling of dread that can stop you from doing something really stupid. This would be a complete waste of time and money.
Thank you,thank you, thank you for your kind words!
I'd cancel, not just for money and time but for your own insanity. You are always going to have to deal with lots of doctors and if you have other options of good neurologists you shouldn't have to deal with a jerk doctor.
i had similiar experience with neurologist was sent to him he told me to strip down to underwear paraded me across room in front of trainee doctors said his opinion was i didnot have lupus i was just fat. left the room and 2 hours later i was waiting for him to come back. when a security guard in hospital said they forgot about me and my husband. and had gone home the clinic was closed nobody was there. needless to say i never went back and my rhuemi sent him a real nasty letter regarding the way i was treated. all blood tests were positive for lupus. he was just a arrogant idiot. go get your second opinion you have no need to put up with being treated that way.and putting you through which maybe un neccesary tests. good luck
I think I might have threatened a bit of legal action on that occasion!!
I did more research and found that narcolepsy is a bit more involved that simply falling asleep inappropriately. It is even connected with autoimmune diseases. Sometimes, it's as if your body falls asleep but doesn't tell your mind. It was from the National Association so it seemed credable. Also, my primary doctor was over the moon that I got in with this guy and wants me to do all of the studies. I can't say that I'm too thrilled but I guess I'll suck it up. No seizure medication ever stopped my seizures. I guess this time I'm going to lean on my primary guy and let this self-important schmuck pull his power play. I'm NOT happy but I am desperate. I do get mind-numbing fatigue but I don't fall asleep. Feeling refreshed (like today when my sleeping pill allowed a full 10 hours of sleep) is such an incredible gift. If I could get that on a daily basis, I might not fear working so much. I also really, really want the lumbar puncture. I fell again today -- of course on my bad knee! That makes two big falls in three days. If I have MS, now would be a good time to know.
Thank you again for all of your support. It means everything!
I dealt with an arrogant neuro like that one. He was certain that it was MS, even though I told him that the specialists in Houston had already ruled it out. Like you, I agreed to the lumbar punch just to get the added information. When it all came back as normal, he dismissed me and told me that there was nothing wrong with my muscles. I pointed out that Sjogren's can cause many of the symptoms (I had recently been to a Sjogren's conference and had listened to Rheumys and Neuros who were experts). He also dismissed that and said that SJS is only dry eyes and dry mouth and is easily treatable.
I've refused to see him again.