
Neurofibromatosis Support Group
Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....
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 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
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.
He then said oops, sorry, I should be more sensitive, and has been a better dr (for me) and did a little more research. :)