hi! to start if you are being transported to the hospital by an ambulance and your condition is not life threatening, then you have the right to tell them which hosp to take you to. Second, look on line, you can find list of Doctors by specialty and call to arrange an initial visit. And dont forget to google the doctors you would be amazed at what you can learn. Look them up in local papers and ask questions of people you know. Word of mouth is very effective and very accessable for info. Wish you the best.
I just wanted to say Thank you for your input. I am going to start the looking for a new neuro this week. I have yet to hear back from the dr. that I saw..thats good LOL. I have not taken myself off the dilantin. I am a bit fearful of doing that. Seizures are not fun!! I appreciate your concern, and know that I am taking care of it.
Thanks again,
Alley
Dear Alley Kat,
I just want to put my two cents in here. Forget about that stupid wierd neurologist. He won't be in the medical profession for long. Stay on the medication you are on, do NOT go off the dilantin.
Concerning your seizures, you most definitely must visit a specialist in seizures, and your general doc can refer you to an expert. If there is a wait to see those referrals, your general doc should also either raise the dose of medication you're on, or give you a second or alternate barbituate medication.
If you want to, if you don't think your local people are good enough, then forthwith pack up and go to the largest university hospital in your state and walk right into their ER for treatment. I might also mention you should get your hands on the CT scans that were taken while you were having a seizure, copies of the entire record of that particular visit, even if you have to go down there and get them yourself.
I consider this an emergency, because if your seizures come from a bleed in the brain, it can be life-threatening. You simply cannot be falling all over the place seizing up. This is not normal. There are excellent treatments for whatever caused the seizures, and it sure as heck isn't a sleep test or mental health investigations or anything else that requires a long wait for a bunch of appointments with fifty million people.
Thank you for your response. It has been a few days since my appt. and although I am still angry and confused I feel I can go on and find another neuro. I'm really glad you found a good dr. They are few and far between. I think I will talk to my primary care dr. and see if he has any reccommendations. I know he will send me to the "other" town, but it has to be done.
BTW, I live in Maryland.
Well again, thank you.
Alley
I hear you on that one.
1.Neurologist- "I think you have MS, and we need to do some tests to confirm it. It isn't such a bad disease to have.....etc": I was sitting in a fetal position crying my eyes out...she said this on the basis of functional testing on the first office visit..by the way I almost killed myseld, had to go on antidepressants and see a psychiatrist because of that... And I DON"t have MS!
2. Infectious disease specialist-"You can't have lyme disease, it doesn't happen on the west coast, only on the east coast. I think you have a sleep disorder" I had complete neurological devastation, fevers etc.......sleep was one thing I could do.
3. Rheumatologist-":You don't have anything I can treat you for. You see a psychiatrist don't you? Go to him and get on some stronger medications...." Like that will help with the neurological damage?
4. Neurologist- "I'm going to send you for physical therapy to a woman who works magic so you can learn to live with your muscle pain" I have superficial neuopathic pain. And I looked at the prescription in the car and he had changed my diagnosis from one wrong one (restless leg syndrome) to another wrong one (fibromyalgia)without even telling me!!!!! And he wanted me to watch Monty Python movies as part of my treatment!!!!!
5. Psychiatrist-I have this weight loss product I want you to go on..(I had just dropped 40 pounds), I have this test that can measure the levels of brain chemicals in your urine and in 6 weeks we can start you on supplements I can sell yuou that will enable you to get off of your psychiatric medications.! (I am bipolar and have been exceedingly stable for several years on my meds) he made my skin crawl.
Find a physician referral service from a local respected hopital. Ask other people who have the same problem and live in your area who they go to. Ask your other doctors for a recommendation. Call up (for example( the UCLA doctor referral service. Find a place onan onine site and discuss it. Lyme disease people don't post doctors names because there is a big controversey about how to treat the disease and doctors get in trouble. So, we talk about it by email.
Call the neurologists offices and ask questions. I had an infected scalp problem nd went to a dermatologist who I found out doesnt'nt like to deal with infections. That was a nightmare. Nextg, I got a list from the hospital referral servie and ased each office, does the doctor treat scalp or skin infections or is he mainly cosmetic? zI landed a good one...and he has the most gorgeous eyes......
This episode of neuropathy I have seen two neurologists,, no three neuros, and two primary cre docs....I am seeing one I trust right now.
does your profile say where you live? that helps.