hi I am Melissa AKA Missy looking for a support group for people with NF or a related illness I have Angiolipomas all over my body I'm starting to have pain at my tailbone and numbness in my extremities I'm asking for help because the doctors just scratch their heads in treat me like a number I do like my specialist in Boston and he does go out on a limb to do anything he can for any of his patients but when you have something real in their learning about it through you verses being able to help you it's really hard. I don't know what to say other than I'm kind of losing mobility and not many people have any compassion or any understanding of falling over my whole left quad leg it's all knew I must have like thirty new tumors forming I used to be accused of drinking coffee gives me too much by my brother was a doctor and then I found out I have a condition. Is there anybody out there to chat?
I just got back on daily strength it's been awhile. I also have NF. I found out about it after i join the air force in 1985 and I got pregnant and nobody knew much about it. Nobody told me not to get pregnant a second time and my youngest son has NF. I was medically retired in 1993 after having a c-section because of lots of bleeding and anemia I kept my tubes because i was in my 20's. I got cancer in 1995 and 2012. I had a tumor in me either cancer and the doctor's didn't catch for 10 years before they removed it when they first found it the doctor screwed around and i almost died. I had a whipple which is a very complicated surgery on my stomach and because of doctors i spent 10 weeks in the hospital and almost died twice because they kept throwin me out of ICU and giving me a drug that i was allergic to twice. I now have been diagnosed with PTSD because of the stay in the hospital and have seizures and the neurologist told me to get rid of the stress and come back in 6 months well I dump him and found a better one. My son also has NF and a learning disability because of it and he is now 31. He has lots of tumors and one on his hand that is starting to cause problems. I hope you can find a good doctor and have you been to the NF website? It has lots of info most primary doctors don't know about and I had a doctor tell me I wouldn't get cancer and i sure prove him wrong. Good doctors are hard to find and when you find one hold on to them and get the help you need. I hope you have a bless day and write me if you want.
Robin