Neurofibromatosis Support Group

Neurofibromatosis is usually noncancerous. There are three types of this condition. Type 1 usually appears in childhood, while Types 2 and 3 appear in early adulthood. Type 1 can cause bone deformities, learning disabilities, and high blood pressure. Type 2 can cause hearing loss, vision loss, and difficulty with balance. Type 3 can cause chronic pain throughout the body....

85 Members
823 Posts
0 Online
Genetic & Metabolic
/ Neurofibromatosis Support Group

finding a doctor is hard

deleted_user
deleted_user
i went to a doctor at the clinic we go to to get a fibroma removed from my foot its cuasing me problems. i asked if he could remove a few fibroma's from my arms and legs that were getting bigger so i could wear shorts and short sleeve shirt he replyed why the will just grow back. i got so upset i left. i going to drive 3hrs to go back to my old doctor i cant believe he said that and he wanted to show me off like i was a freak do you mind if i have my students look at you you have a a disease thats not common. cant they understand i cant stand to look at myself at times let alone have others look at me. anyone else ever have that happen
deleted_user
deleted_user
lol sorry, but i get that too when i go to the Dr's a lot. when that happens i feel like i'm some freak in a side show, it makes me so angry!! i stopped getting my bumps as i call them removed, i got the same response "they just grow back" i don't know what to do either. i have to where flip flops all the time because of the bumps on my feet. you should see the looks i get in the winter, they must think i'm crazy, and i can't have a coat on because the weight of it on my back. lol i'm just one messed up lady. lol sorry, i just know what you are going through
Marah
Marah
I know just how you feel. I have had to talk drs into removing the ones that hurt for the same reason, because they will just grow back. And you know what 15 years later, they haven't yet. And the ones that just make me look like a freak, don't even ask. The last doc said, "well, we could take that one off too, but where would we stop." I wanted to yell at him, "How about when they are all gone!!!!" I wish that doctors could have these things for just one day. Then they might understand.
fabulous
fabulous
I had a doctor tell me "why would you want to remove them, you have thousands" I was so taken aback. I wanted to tell him where to go how to get there and if he needed my assistance, But God dont like ugly, because I believe he lost his private practice.
fabulous
fabulous
Oh, I do have one doctor who has no problems removing them, but he is a dermatologist and only removes 3 at a time, with that rate It would take a million years. Yeah they all be gone when Im a million years old. (but for real he is a sweet compasionate doctor, I wish he was a plastic surgeon) and trust me if these so called doctors (more like money hungry sharks) had children with it, it would be removed faster than you can say removed
deleted_user
deleted_user
Some doctors are jerks. Any of the bumps I have had removed haven't grown back, but others have grown in other places. Sometimes I feel like that whack-a-mole game at the fair--lol. I wish I could find a compassionate doctor that would understand how I'm feeling instead of being so blanking clinical.
deleted_user
deleted_user
What I love is when you tell a Doc you have NF and they say .....whats that??
deleted_user
deleted_user
yea, i just receantly changed doc because of that, i went to my pcp, cause a tumor was really bothering me, he just kinda blew me off, i called to go back a few weeks later for an appointment, he was not available but one of his partners was, he sent me for a mri, it came back suspious for cancer, he sent me to a specialist who removed the tumor it came back as non cancer, i changed my pcp the doc who sent me for a mri, it was real close call, just think if it had been cancer, yea and i have also gone to doc. who did not know what nf was,
TennesseeKidd
TennesseeKidd
I work in the medical field and have had pics taken of me. I don't mind because it teaches docs and thats important to me.I don't like myself sometimes. But God put me here for a reason he didn't guaranteed it would be easy.
deleted_user
deleted_user
It may take a lot of phone calls to dermatologists or other doctors beefore finding the right one who will remove the tumors and have insurance pay for them. The ctg.org site has a document that helps doctors work with insurance companies on this.
I've had many removed now, I'm a "regular" at the dermatologist office & the ladies who work there are amazing! So far, none of the tumors that were removed have come back in the same area...& I get 2 removed every 10 days.
Posts You May Be Interested In
  • traceysmith

    Getting immune system removed

    Posted by: traceysmith
    Last Reply: MsADSF
    3
    I have had Ttp twice this year I'm 48 my doc said the next time Ttp happens they will take my immune system. Has anyone had this done? Does it work ? What other problems do u get?
  • irishwriter

    come unwind in the bp lounge

    Posted by: irishwriter
    Last Reply: mlr0853
    7955
    theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??