Honey,
I don't have this condition but I read about it and I know what this is and what you have to deal with every minute of your life.
I just want to say I am so sorry you are in so much pain; I wish I could help you more. I am very happy to came to this board for support: people are so wonderful here and I am pretty sure it will help you with your problems. Often talking to people who understand how tought to leave with CP may help our minds to cope with it better...
Welcome to the board! This is a great place to come to for support. We are family here!
Sorry about your affliction and the pain it brings you. What other meds have you tried? What does your doc say about the mscontin not working any more? I take Oxycontin. I have tried other drugs but this works the best for me. It's no fun being a guinea pig while trying new drugs but the pain control is worth it.
Good luck from a fellow Washingtonian.~Mush
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undiagnosed lung and back pain after pneumonia in '03, tmj, migraines,(two failed surgeries for) Kienbock's disease
i also have nf half of my fam does too i have one in my arm and it requires surgery because the extreme pain . and the people who feel sorry for us dont realize the pain and agony we have to deal with day after day. i also have tumors in my neck on my lung behind my eyes well pretty much everywhere. so onedustytrail maby i am the onlyone at this time who feels your pain have you tried GABAPENTIN I am taking 300 mg and need to go up to 600mg it works but makes me sleepy
i was born with nf also, my momther gave it to me and her father gave it to her. im 15 and i dont have it as badly as most, but i have one by my left lung and a few on my panteris , sorry for my spelling. and i have mri every year but im used to it by now but i go to this camp every year in setpember, in texas its realy fun i forgot where it is but its a camp for family who suffer from nf. its a 3 day camp but theres a lot of fun things to do. like on the night you come there a bonfire and the next day there a lot if ativitys to do. like connuing in the lake and swiming in the pool, acuhori and a party that night after the talent show. but other than that, its fun to meet new people that has nf. XD anyway i just wanted to say this. and good luck with the people that has nf worser than me i feal veary sorry for you guys.
Onedusty.... I dont know what your disease is but my goodness it sounds horrid. I can only relate to the chronic pain that you suffer as I suffer with chronic back pain, but I wanted to say you certainley came to the right place, there are some amazing people here that may jump in and be able to provide you some insight on suggestions as well as share they're stories with you about what has worked for them. I just wanted to say i'm sorry that you are suffering and hope that you will be able to get your pain under control.
Rissa....
Wow, 15 yrs old, bless your little heart. You are so young to have to go through such horrible pains and I feel so very sorry for you. I love that you came to this post to talk about your camp that you go to and how you are on the boards and hope to help others with the same condition. I think for being 15 yrs old and posting on boards such as this, you must be an amazing young adult and your parents should be very proud that you are willing to help others by telling about your own stories on how you deal with this. My heart goes out to the both of you.
Lisa
I'll add in my greeting. I've had NF since birth. Inherited. Only one other relative that I know who has it. I can trace it back to my great grandfather, however he only (best of my knowing) had cafe a'lait side of it.
I tend to hang out in the Neurology sections... so sorry for not finding this sooner.
I DO have something NEW that has not happened to me before last week... Maybe this can cause a good discussion here, and help a few of us.
The growth that has existed for ages above my right eye (eye brow, topical growth) all of a sudden ballooned and I felt a pressure on my eye. I went to look in the mirror and it looked as if I had been in a boxing match and was hit with a left hook (the swelling). The sensation of pressure isn't as bad, but it was a QUICK onset for no reason I can find.
As well, last fall I had NEW (hadn't had those) growths on my left hand, and a few of these for the first time are causing PAIN at times. (shooting pains)
I found a NF clinic in the metro, so I may end up going down there when they are open, but the eye is what really freaked me out last week.
Hi one my name is rich i have nf1 2 1/2yrs ago i had one removed from my spinal cord i was in great pain at the time, i was told if i didn't have it removed i would be crippled, my whole left side of my chest is still slightly numb from the nerve damage . I also have hundreds of tiny tumors al over,. I have hade several removed over the yrs . Just recently i started feeling some of the symptoms like i did 2-1/2 yrs ago, i think one might have popped up on my spine again, waiting to see if the symptoms progress. Just want to wish you the best
There are THREE clinical trials around the country that I can confirm. Oral (pill), topical (lotion), and IV delivery (out east I think for IV study). DIFFERENT medications in those three trials. Do your best hunting on the web and you can try to find WHERE they are doing the studies and who is in charge.
I found one near me, phase 2 "open bottle" looking for around 60 persons, all getting the medication. Have not heard back either way. I still have my hopes out that I will be accepted with my history.
The sudden "shots" of pain I get in my hand due to the small growths are NOT fun to deal with. Surgery is not fun when you are dealing with the fingers and palm regions. Way too delicate of an area to be making incisions. You don't want the loss of functionality or nerve sense. That's why I had my hopes out for the drug trial, see if that would help reduce some of the growth/s (or maybe even MORE!).
There is a NF1 drug study that's recruiting. My files were to have been sent down.
I was to have my files sent to a well known hospital to have an apt. set, and see if I qualify for the phase 2 study. This was back in March. As of this last weekend My name wasn't in the system there. I hadn't heard a yes or no if they wanted me. By email I found out I DID have the correct location, and was emailing with the coordinator of the study. So that helped clarify some items.
On Monday, when MY local clinic opened, I called and left a message with the person I needed to about my file missing down there. I was called back. They were shocked that my name wasn't down there and my records could not be found. In about 90 minutes total time I had a temp patient #, day booked, and a time slot to be seen!! A lot better than the months gone by where it was in idle!
Now it sounds like I may have to switch medications (for seizures) IF I qualify. That should be an easy jump hopefully (I think I already know what I can switch over to).
I hae Neurofibromatosis and those shooting pains you are talking about. The seizure meds work great. Its odd, you can feel the "zap" but it does not hurt when you are on them.
I tried one of the meds for a while and it put me in "la la land" to much I couldn't take it so I had to go off. Now I just take tylenol with codeine. Some days that will work others it doesn't. Usually when its really cold outside or I bump my hand against something.
My problem is the ones that cause me pain are on the hand, and fingers to be precise. Some by the joints of the fingers, so we are talking about nerves, muscles, blood vessels all tightly packed near the bone as you can imagine.
I'm on AED's (anti-epileptic drugs) due to an astrocytoma (star shaped tumor) that was the start of my seizures back when I was a kid. NO choice really there. I know how some can "space" a person out. Phenobarbital was one they frequently used a while back that could cause unwanted symptoms when on higher doses.
I can tell a story when they pumped me up with 600mg of Pheno and I was only taking 15mg/night...Talk about lala land. I didn't remember leaving the hospital or getting home, or even removing my boots; guess I removed them before falling asleep fully clothed. I awoke a day and a half later! (Half life of Pheno is about 96 hours, but can be as long as 140 HOURS in some people.)
I'll consult with the doctors down at The University and see if I need to change only 1 or 2 meds. If it's two, I won't do the study. Too risky. I won't go from having my seizures controlled to uncontrolled just to partake in a drug trial.
I have genetic tumor disorder that has played havoc in my life. My first major lung surgery was when I was 5 almost 6 years old. I was given the phrase mimic tumors where the surgeon says they look exactly like cancer. In 1990. I lung lobe removed & it was good . The Dr shared all his feelings with me why he made the wrong decision so I would know for future occurrences. I just didn't know that the next surgeon would care less. I lost another one n Sep 2010 which to me is outrageous, I told the doctor and he knows the previous surgeon. I've never imagined having thousands of tumors or the pain of several on my spine. I would like to know the outcome on your situation. I have one on my right lung, liver, spleen, vertebra, and Humerous. I don't have pain often. I had screaming pain in my ARM when the enchondroma was forming . I have unpleasant discomfort that I can't describe on my lungs when I've reached my limit . I'm limited to hygeine and pulmonary rehab. Is anyone going to research genetic tumor defect ever? I 've had multiple lung resections. There isn't going to be anymore testing I'm being told. I need double lung transplant. Needless to say, I'm not worth it. Is there any org to collect money for this disorder. Anything??????
Re: Neofibromatosis (Genetic Tumor disorder) 
