Neurofibromatosis

[sarah H]

I'm Sarah, 35yrs.. I have NF1 been diagnosed in my teens when I was being treated for scoliosis. Never did anything about it than cause all I had was just spots and freckels, until I got pregnant in 2005 when lumps started appearing. I have a few on my back, tighs, hands and fingers. But the worse thing is the pain I get in my left hand, sometimes even hitting something with my finger the wrong way shoots pain straight up my arm. I've had MRI scans but all clear, I see a Neurologist every 6months, but she cants seem to understand my pain. I would like to know if anyone suffers from this kind of pain what do you do live with it cause that what my dr told me!!!

[ecflagcorp]

Im 28 and have NF1 also. I think I was diagnosed with NF in my early teens. I have a spot on my knee that if I hit/bump it, I go straight to the floor in pain. It feels kinda like hitting your funny bone, only it takes the breath out of you. That's the only spot in my whole body that if I bump it I just want to cry. I've seen a doctor as well, and he wasn't sure. I've had x-rays and stuff of my knee, nadda. I believe it has something to do with NF. I'm not 100% sure, but I'm almost confident.

Also, when the weather changes I have a shooting pain go through my whole knee. It will sometimes wake me up and the only relief, believe it or not, is a slight pressure over the whole knee. I got one of those sport knee supports and it's great. It gives just the right amount of even pressure without sending intentional pain through my knee.

I know yo can't do that with your finger, but maybe the more people post to this the more we can put our heads together to figure what the heck it is.

[pepp]

Well, I don't have NF. However, what you describe sounds like what my friend had. He has NF and experienced those same types of pain. He also experienced (later symptoms) issues with bodily function because internal tumors were growing and impacting his organs.

I do have good news for you though. He has taken part in a clinical trial of a drug that is doing great things for him. So, I would suggest continued research as well as a specialist. Mayo Clinic has some great doctors. There are also NF clinics all over the country that might be able to help. I certainly think that there will be ways to make things more manageable for you at the very least.

I'll pray that you find some assistance.