r/neurofibromatosis

My 18 year old daughter has multiple cafe au lait spots, some very dark, other quite light. Just recently she complained of ringing in her ears and moments of hearing loss. She works at a kennel and the barking dogs really exacerbates the ringing.

Id like to have her seen and evaluated but I don't know where to start. ENT? General family dr? Audiologist?

Any direction would be appreciated.

I made an instagram post for NF awareness and I'm really proud of how it turned out. I made it into a "seamless carousel" post so it looks better on insta than it does here. https://www.instagram.com/p/DX4Z1AlDDFi/?utm_source=ig_web_copy_link&igsh=NTc4MTIwNjQ2YQ==

https://preview.redd.it/qvq1ykr1oyyg1.png?width=1080&format=png&auto=webp&s=93f5697a00144728926bf17108fb84985159e96a

https://preview.redd.it/rb0ikks1oyyg1.png?width=1080&format=png&auto=webp&s=bf1ae64048d48e32e5dd1d06336027d624f14987

https://preview.redd.it/1wkbgkr1oyyg1.png?width=1080&format=png&auto=webp&s=021911fca628bafb25e7ca3f92af572e682b14ee

https://preview.redd.it/hh0fkmr1oyyg1.png?width=1080&format=png&auto=webp&s=4170483e7695044a8a509e7e07dd24b8b6d075be

https://preview.redd.it/2ag7ykr1oyyg1.png?width=1080&format=png&auto=webp&s=b57924f564a56e6b9e446f9cd4894fd0217434e4

https://preview.redd.it/i5w4blr1oyyg1.png?width=1080&format=png&auto=webp&s=5821ad0efa255373456db19131b4477443ebdccb

Hey everyone, I want to just say one thing that bothers me is when others “ claim “ fibromas were onset by things were unsure would even onset fibromas. I see far too many claims in comments that say “ the sun caused these “ , going through a security checker caused these”, the heat caused these”. I also know it scares younger generations to see such things.

I see a common trend of onset during pregnancy, puberty, menopause, perimenopause, etc.

There’s very few things we know about the CNF and what does and doesn’t cause them. we shouldn’t always assume that the sun caused them or other such wild claims even though it’s hard to decipher.

I hate the stigma around NF, and support groups The feeling that it’s all “ doom and gloom” all pitty. Which lll admit I have been that person before. I get it we don’t feel beautiful or we have hard circumstances but I joined these groups to feel uplifted ( in a way of feeling supported) but since joining I feel nothing but fear and hopelessness. “ this sucks “ “ this is the worst” which yes it’s hard but I seldomly feel support

By uplifted I mean supportive. I’ve posted questions that don’t even have to do with what some people comment on my posts, they end up insinuating I’ll be vastly covered in these bumps because they are, or because they experienced cancer in a similar tumor that cancer will become my outcome etc.

⚠️ DISCLAIMER : MY FRIEND IS NOT ON SOCIAL MEDIA AND HAS ASKED ME TO ASK THIS COMMUNITY FOR ADVICE!!!!!! I have permission to share what I have shared/ this is the info she has given me⚠️

I know each person has different manifestations. My best friend I met right out of hs ( ironically met at our workplace) has ZERO cutaneous fibromas like not even one. i don’t know even think she has any of those purples spots / internal fibromas things.

She did have a brain tumor removed at 16 years old due to seizures and she’s legally blind. I believe it’s probably nearly impossible for the tumor grow back. She has 2 kids and hasn’t passed on NF yet. They’re 2 and 9 months and she’s pregnant again! Due at the end of the year The had a couple of growths on her thyroid but I’m not sure whether they were NF related or not? She never said

All that being said, she isn’t on this platform but has questions and has asked me to reach out. Hopefully I’m able to address them and get answers from you guys for her. She recently moved states and doesn’t have an NF provider there .

-Do I still have the same cancer risks as anyone with NF since mine is mild ?

- Will I ever grow visible tumors since I already don’t have any?

- is it likely il never pass on NF because I haven’t yet?/if I do will my children have it mildly like myself?

-since I’ve been mild for so long with pretty much everything , am I in the clear? Hopefully someone can answer these and relate ?

Hello all,
I have NF1. I have some issues centered around NF like optic pathway glioma that have left me really sensitive to white light causing severe headaches. I get lots of chronic pain like pins and needles, my muscles tense up for days on end leading me to limp, I also get muscle weakness**. I saw that there is DOR program for helping students with disabilities pay for college as well as help them get accommodations. I was wondering if anyone here is on disability or has a disability service of any kind. I am also not sure what to ask my doctor for in a note.**

I would appreciate any tips or experiences.

Edit: California. I’ve been looking into the DOR school program.

I am 22 years old and the only one in my family with NF1. i have no way of relating to people because it feels like I’m the odd ball out. any one feel the same

So i was born with NF1 and by me i have a tumor on my right eye nerve, i have yearly check ups to check if my vision on my right side isnt worsening, but nerly every time i do the check up i have a new docter who thinks i dont understand the test works.

How the test normaly goes:

-tape off one eye

-chin on chinstand

-4 yellow lights in the middle with a light going less and less bright and i have to say when i can see it with a buzzer

-lights all over a half circle and click the buzzer when you can see the light.

What keeps happening is that the docter when testing my right eye thinks i dont understand how the test works because i dont click by step 3 (i dont see the light, not even the yellow lights). I even had a docter offer me a lens in front to 'help me see', it does not, i have a turmor on my right eye nerve. I hate the fact that docters who learned years know less about it than myself, and they dont even lisin to me.

I understand every NF isnt the same, but please lisin to patients when they say they cant see it, and do not restart the test 5 times.

to annyone wondering here is how much i see with each eye (just had a test with a nice docter):

left: 125%

right: 3,33%

When i was younger i did a test about all disabilties, and it came out that i have ADHD and dislexia, my parents always tell me neurofibromatosis causes it, but i dont belive them, do anny of you know if its true or lied to make me feel better?

im 24 and have been diagnosed with nf1 since i was around toddler age. for the first couple decades of my life my mother (who also had nf1) never really educated me on it. around the time she died (at 50) i started truly educating myself on it and all i can say is im terrified. growing up i thought all that was wrong with me was cafe au lait spots all over my body. as of now i have a few small bumps in various spots (my neck, back, wrist, and butt) but theyre not noticeable at all to other ppl and i havent experienced any pain with them. I also have pretty bad scoliosis. anyways one of my cousins who has it is now on chemo for a brain tumor. i know that part of having nf1 is doing preventative testing and making sure there are no internal tumors especially on the brain. the last mri i had i was about 18 so its been a while. when i was 22 i had my medicaid taken away because they claimed i “make too much money “ but after all my bills i have nothing leftover for health insurance premiums and co pays :/ i feel so stuck and hopeless. the fact that i could have a life threatening tumor and have no idea because i just simply cant afford testing keeps me up at night. and even if i did want to try and cram a health insurance bill into my monthly expenses i would have to wait until enrollment period. i dont even know what to do anymore, most days i genuinely wish i was never born. anyways are there ANY resources for me? i tried to sign up for several studies but they all said i live too far. (i live in in southwest Michigan extremely close to the indiana border)

Ever since I had the reaction and subsequent flare up that followed. I have now been plagued with this prickly feeling. At first I thought it was rain and I was getting wet. Then anytime I was in the breeze I feel it. Tonight I got on my Harley and rode for a bit to find dinner and I was wearing my mesh jacket so I could feel the breeze and it honestly at 50-60mph it was getting painful as heck. Never experienced this level.

I used Grok and it explained it may be a bit of paresthesia with my nerves still in overdrive.

But on top of all this. It’s almost hard to explain. I don’t have any piss and vinegar left in me. This was kinda my last hope.

I see my neurologist to discuss the next step or if we will continue at a lower dose to see if the flare up comes back.

But this prickly wet feeling. I don’t like this one bit. My quality of life is slowly fading into daily bouts of severe pain. And anymore nothing has been helping.

as a girl who loves dressing up, i just hate not being able to wear anything i want because of my bumps i hate having to cover up for something i cant control

im 23 and im scared i feel like my fibromas just keeps getting many or maybe they were the old ones and just paranoid, im just scared and sad cause some people during their 20s didnt even have any visible fibromas but i have some on my arms,jaw, shoulder, back and chest already im so broken

I’m a 43 male living in the USA. I was diagnosed as a toddler, if not earlier. NF1 runs in my family. My grandfather had it. My dad and 2 brothers have it. Several aunts and cousins too. One of my brothers in particular has had severe medical complications. My family once was on the news highlighting this condition. But this is about me. I have the cafe au lait spots and nuerfibromas.

Growing up was rough and I was always behind both physically and academically, though I seemed to catch up in high school. I have the ADHD and am probably on the spectrum.

The bumps have increased with age. I don’t like standing in front of the mirror or taking off my shirt and seeing the nuerfibromas. I worry about the future and how many more will grow and where.

I try to keep perspective and not worry about tomorrow. I think that is the key…trying not to dwell on it and create unnecessary misery.

I graduated college with a bachelors degree in religion and philosophy. I’m a smart cerebral dude. Just had to find my way.

I have a successful career in technology…going on 15 years in the IT field.

I have a wife who loves me dearly. I can’t imagine my life without her. She’s a teacher. We own a home.

I have unexplained male infertility. Yep, 100% infertile. So that at least solves not passing NF on. Cause I wouldn’t wish it on others, especially my own.

I go to the gym regularly for weight training and cardio. This helps tremendously both physically and mentally.

I have scoliosis and my muscles are TIGHT. I have some chronic tension. I receive regular massage therapy, which makes a difference.

Social relationships are hard, but I have some incredible friends who enrich my life.

I love hiking and the outdoors. I enjoy gardening and watching my trees grow and flowers bloom.

I absolutely love music and go to concerts, though I’m not musical at all. Country singer Eric Church is my guy and his song “Some of It” is my life song.

I have a spazzy black lab who adores me. He has a couple bumps too.

I hate NF, what it can do to people, including me. But Life is GOOD.

Community is good. I hope this can be encouraging to others. Life can be and is good. Find passions and take care of yourselves.

-Jason

i'm 17 M nf1 outside looks mild , just frekles and spots , but i have a slight scoliosis , and the doctor told me i have something in brain, she didn't sayed its tumors , they are small that they can't even tell what is it, and in one year these things havent changes she told me , and this nf made me , not whanting to get into relationship cuz what if i'ma dye at 30 and have a wife ? she will be broken, and also the thing with kids, but yeah, and i whana sk if this is common in people with nf ? also i'm underweight 45kg at 163cm ( 5'3 ft )