Neurofibromatosis isn't THAT rare. 1 in 3,000 people are affected with NF in some form. Which makes me wonder why there aren't more Drs who know how to treat the symptoms that come with NF.
I actually had one DR recently tell me that my NF should not be causing me any pain...Ok maybe it should NOT, be, but it IS! She went on to tell me, that she would not prescribe me any pain medications because her past patients had taken advantage of her. So round and round we go.
It's like I am trying to change a dirty diaper with one hand tied behind my back. The job, however tough it may be, CAN be done. There ARE solutions and ways to do it....I just need to find them.
I have an MRI that diagnoses me with hydrocephalus. I have NO history of EVER abusing narcotics. And....I am very obviously in pain....and my Dr doesn't give a damn. "The only thing I can do for you, is UP your Topomax, Kristi."
(I take 100 mg of Topomax nightly and have found no change in my headaches. All I have found happening is blurry vision, my hair falling our and I'm dizzy and hell)
I ask this "doctor" about sending me to a pain management clinic and she tells me that there are none available in our city. I swallow hard, and close my eyes.
What does one do, when no help is available? Where do you go? Well....You just keep searching for that one place or person who CAN help you. I found that place in The National Institute of Health. They know about my headaches.....I have Drs there who listen...who care. I hope one day, I can participate in research for NF and headaches. Until then, I won't give up....give fighting....keep THRIVING.