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OK PEOPLE. THE LAST TIME I WENT TO SEE A DOCTOR. WAS AGE 12..HAVENT BEEN SEEN SINCE.CAUSE I HAD NO SYNTHOMS. 30 YEARS LATER.I GET THESE SHARP PAINS.IN MY FINGERS' AND MY LEG. N SOME TIMES MY FEET. I TAKE ADVILS..AND A PAIN MEDICINE..WHATS THE BEST METHOD FOR PAIN.. CAUSE THE PILLS I TAKE AINT WORKING.
I have had this type of pain before. I use to do factory work and my pain in my shoulder and neck area was the worse. Do your fingers and toes tingle? Mine did. Anyway, you need to find a neurologists that is very familiar with NF. If you can't find one then do some basic searching on the net and make an appt with some kind of doctor and take the info with you. Tell them you have spoken to several people with NF with simular pain and you would like to have some MRI's ran. These should or could show any underlining proplems. Mine did! I have some issues with some plexiforms and what is refered to as "exiting nerve roots". I take a medicine called neurotin ( think I spelled that right) it is for deep nerve pain. Now it is not a pain medicine like morphine or even hydrocodone but it helps me alot. It's not a kill all but if you find a doctor that you see on a more regular schedule they will be able to help you more. Do finger and feet stretches. LOL I know that sounds silly but it might help!
THANKS ALOT FOR YOUR INPUT.BUT I HAVE AN APPOITMENT TO HAVE A PRIMARY DOCTOR. NOV,6.AT LEAST I AM HAVE A DOCTOR.THATS THE GOOD THING..I JUST AFFRAID OF DYING FROM IT....ALOT OF PEOPLE SAY U DIE FROM IT..
No you don't die from NF, it will be something else maybe related but the disease itself does'nt kill you. It sounds like you are having nerve issues from NF like the rest of us.
Just be honest with your doc and if he is an ass with you find another one. My son has had a terrible time trying to find a decent doc who will listen to him. He is having severe back pain and I think he might have Nf too. It took him 3 docs to finally find one. They all think that he was drug seeking and all he wants is the pain in his back checked out. He had one tell him he was an addict because he smoked cigs and ranted on it so my son just left his office after he called me and asked me what he should do. I was the one who told him to leave.
I have worked in the med field for 30 yrs and have seen alot of asshole docs in my time. They have big heads and think they know everything but can't even tell you what Nf is.
Good luck on that apppt and keep us posted on how it goes.
U KNOW WHAT THANKS FOR YOUR INPUT..AND WHEN I SEE A DOCTOR WHAT SHOULD I SAY.ABOUT MY CONDITION.THANK YOU SO MUCH FOR YOUR SUPPORR
I'm also having trouble with a Dr. office. This Dr. is one of the foremost authorities on NF, and runs an NF clinic in a large city near me.
His office requires a referral from your GP before they will see you. The only issue with that is that my GP did not diagnose me with NF, I was evaulated as a child and I have no idea where those records are or if they even exist any more.
My GP has not really treated me for anything related to NF except for just recently when he saw me for my leg numbness and is sending me for an MRI tomorrow.
I would think, as for the NF Dr., especially since it is a large NF clinic in a well known medical center and teaching hospital, that he would make it so diffucult for an NF patient to be seen.
My GP has now made the necessary referral, BUT, I have to wait for the NF clinic Dr. to evaluate my GP's notes, and HE will decide, based on the evidence in the notes, weather he will see me or not.
To me, that's just crazy!
WHAT CITY ARE U FROM. AND WHATS A G.P.
I am from Granite City, 10 miles from St. Louis.
GP is my general doctor.
Thanks,
Glen
http://www.calpatientcare.org
This might help. Look on this sight to see what your options are for healthcare in your area. Unfortunately ORSA is only available here in the Los Angeles area. it gives you free medical coverage for a year once have your first doctors visit, all medicines are also covered. All you have to do is sign up and show proof of how much you are currently earning. They also have ATP which is the Abilility To Pay program.
I use ice packs for my headaches and it helps a little. That may work for your legs and hands.
Hope this can help you
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