My doctors have all taken this very seriously and said they have heard it all before, it's all very normal, etc and very real. They seem to be very familiar with it all. I don't know where everyone is, but if you are in a small town (??) - maybe go to a big city for care....??? Just a thought. No idea if this is correct but something that I thought. If it's just a drive and a co-pay, it's worth it.

ugh....i live in a big city, still in the dark ages

Well then? I am at a loss. why are so many of you reporting that your doctors aren't helpful. So annoying, huh? They are supposed to know these things.

I live in Washington D.C. metro area and has access to many hospitals and specialists. Most with 30 minutes drive. No luck so far. Completed 2 years and still living with terrible symptoms.

freezerdoor,

The world wide level of concussion knowledge is grossly poor. There are some locations where one doctor has become knowledgeable about concussions and has raised the level of concussion knowledge in that area. Your 'expert' has said some things that make me think that even he is still lacking a bit of state of the art knowledge.

Childrens National in DC has a clinic that has some success although I disagree with may of the positions of Gerard Goia Ph.D., the director. He is a neuro-psych.

When I read the literature and transcripts of testimony before Congress, NIH, NFL, etc. and even some of the TBI lectures before med students lack some critical information. The Mayo Clinic web site is full of errors based on old ideas. I still find that many concussion experts are still missing critical bits of information. Robert Cantu, MD in Boston and Julian Bailes, MD in West Virginia are leading the pack of the true experts with Kevin Gruskiewicz, Ph.D. doing much of the research at UNC-Chapel Hill.

Mark - Yeah it's too bad... but specifically that the doctors don't seem to believe the patients... that's what seems unreal to me. I don't think I've ever experienced that. If I did, I think I would walk out and leave without paying my bill.

I'll take note of them if I need to visit another doctor in the future! thanks.

Curious what in particular you think my expert is lacking. Wonder if it's in my translation or truely something he said.

thanks.

pcslife - wow, in the DC area.. there are so many to pick from. I hope you find a better one. I can't remember what you said but I think you are the one that mentioned they just throw medication at you.

On a little bit of a tangent: With my very first appointment, I told my neurologist, "I DO NOT want medication, I am just here to talk to you and understand what I have and how to heal." She explained a lot to me and what to expect. She told me to expect about 3 - 6 months to heal and that I could control symtoms with drugs if I wanted to. Otherwise I was to rest both physically and cognitively but still do as much as I can daily without bringing on too many symptoms...and sent me off. I was back at her doorstep about a month later asking for drugs. : ) Hence the elavil and prednisone. What a great set of drugs they are too. : )

freezerdoor - I have hundreds to pick from literally and I dont need any referals from insurance company and can go to anyone I like. Believe it or not the first neurologist googled in front of me about PCS. She didn't explain nothing (probably don't know about it) and subsequent Neurologists as well. These Neurologists I have seen are supposed to be best and has to wait for 2 months for appointment.

I did take Elavil and other medicines they prescribed which only made my condition worse. I did the complete Prednisone dose for 3 weeks as well. If they prescribed Xanax in the beginning I am sure I didn't have to suffer so much and move out of my apartment etc., etc.,. They pretend they listened to me but they didn't. They didn't want to try anything but newer anti-depressants and Lyrica. You are very lucky you met the right Neurologist. Even I met psychiatrist and he gave me Abillify !! I don't know they wanted to help me or just want to make money from the drug companies. Disappointment after disappointments.

I will be seeing another neurologist my PCP recommended and let me see what happens. I don't much expectation but since my PCP really cares about me I just do it for my PCP.

pcslife. i'm sorry to hear of your struggles. keep us posted. I'm sure if you keep looking, you will find a doctor who will at least listen and work it out with you.

freezer, Your recent post shows her lacking <She told me to expect about 3 - 6 months to heal and that I could control symtoms with drugs if I wanted to. Otherwise I was to rest both physically and cognitively but still do as much as I can daily without bringing on too many symptoms...and sent me off.>

3 to 6 months??? There is no reason for such a comment. It is a shot in the dark to assuage the patient's concerns. No basis in fact.

without bringing on TOO many symptoms??? How many is too many?

She sounds just like the status quo.

I don't understand the concept of using Pred to over-rule the body's own inflammatory response. The inflammatory response has a purpose. It is part of the healing process. Pred for PCS is a definite off-label use.

I'd like to see the research that supports using pred for PCS. It can cause paranoia and other neuroses.

What is important is that you feel better. I hope the Pred does not prolong your recovery. The fact that she listened to you is also a big plus.

If I have a chance, I'll reread your previous posts and see what caused me to question her.