I am so glad to see others venting about drs. I was beginning to think that it might just be me. Not that I am glad the others are having troubles, but I was thinking there might be something wrong with me

I know all the dr's I go to...most dont even have a clue what NF is in the first place. They have heard about it but know nothing. THen dont understand the pain so dont give you proper meds that might help. It is very frustrating.
They dont understand sometimes ppl just poking you in the arm hurts! Mine grow inward to so they dont think anything about it. Family sometimes even.

I might be a bit of a smart ass but i am thinking of pulling info off the internet for my new dr appt on the 25, so when she ask "what is nf", i can give her the info. but then that might get us off to a rocky road, I just don't know about drs anymore

I don't think that is being a smart ass. I think that is being helpful and having needed info for your doctor.

Thank You

I think its a good idea...if you need to use it just say I get thi response a lot so printed out some info for you

Hi Gleason,
I just started a Protocol for FM. I have know my Doc for a long time and he treats all the rest of my family, my Dad with NF as well. When I wanted to start this Protocoll I took him a notebook of information. I also included a letter about me and how my health effects me in my every day life. A letter like this can be helpful in helping your doc get to know things about you that don't come up in the usual Dr. visit conversation. It is also eaiser to list a few topics tou wish to go over in future visits, especialy issues that are defficult to bring up like depression or sexual issues. If there on the list , Doc will bring them up and it is eaiser to get the discussion going... I always have a list when I go to see the Dr. raited by highest priority. It keeps both of us on track...You probably don't need to take a notebooks worth af information, but a few from different sources would be nice use your personal letter as a cover page. Telling you doc about a web site ...gets lost ...handing them a hard copy put the info at hi/her fingertips, so to sy, and they can read it away from work or add it to their stack of reading material. It is soooo much eaiser for them that way. . Keep a copy of your letter and take it with you when you go an additional article each time you go may be appreciated, especialy if you doc dosn't know much about NF. Ask him if ther is particular issue he wants to know about ,like hearing...and tell him you will bring some info for you both at your next visit. He can put the info in your medical record! You are partners in your health care...they can't learn every thing in med school...and remember social and cultural issues change with the times. Invite your new Doc into todays culture of shared responsibility for your health...Best of Luck,
Marty girl

I can understand about how you all feel about doctors! Unless you see a NF specialists, the neurologists, dermatologists, etc. are trained in everything that falls under their specialty & NF is small part of everything they have to know. I agree with PStokley in bringing in information/med journals for doctors. I've taken the proactive approach & researched as much as possible about the latest research and provide that to my dermatologist. I feel that once you establish a great rapport & find that doc who is willing to work with you, they appreciate your efforts because they are too busy operating & seeing patients that they don't have free time to read all the med journals being published....if you can find a doc that is employed by a university, they tend to know more about the "orphaned diseases" because (1) part ego. They want to be in the med journals & recoginized as the top physicians/ researchers in their field.
Don't give up. I found a great derm who I've been seeing for the last 2 years & showed her Dr. Weinberg's technique...she's called him & is willing to try this method on me.

the very first time I met my primary care dr. everything he was checking he kept saying, it is NF related, theres nothing we can do, a few moments later, something fell off the wall, (and me being a smart ass) I said whew, at least that is not NF related, and you can do something about that.

He then said oops, sorry, I should be more sensitive, and has been a better dr (for me) and did a little more research. :)

good for you tearsarefalling, I had a dr. that blamed everything on depression, it seems like once a dr. puts that down in your chart they don't look any further, I was having trouble with constipation (now that is nf related), Would'nt you know she tried to blame that on depression, well I told her she would be depressed too, (cant really say the rest) she then preceded to tell me I had anger issues and she was going to refer me to a physicatrist(spl) I stormed out and chose a new dr. low and behold there was something holding me back, had one little surgery (ouch, ouch, ouch) but help with my problem big time. Some drs just won't listen and it is very frustrating, the age old saying is so true, "Can't see the forest for the trees." I am glad you got your dr. to listen to you

I have been known to tell docs off.I even got sent home from the ER cause my anlke swelling was due to NF and they didn't know about it enough to treat it.I went home with it still swelling badly and hurting so bad I want'ed to cut it off.When they had growth on their nerve whitchever one it is, swelling and pinching it off they can then tell me about pain.I wish it was talked of and taught more than it obiously isn't.