r/neurofibromatosis

Hello, all! Thank you for your guidance and input in advance.

I have a one year old and a two year old who both have between 6 and 8 cafe au lait macules that are at least 5mm. They're all pretty small and I would say they are mostly atypical, but both of them have at least one typical lesion. Our pediatrician referred us to a derm, which we scheduled with but have yet to see. My husband has only 3 CALMs that are more than 15mm and several that are smaller. His are all atypical/coast of maine. He and the kids don't really have any other symptoms of NF so I haven't been too concerned about the potential of a diagnosis. After seeing the pediatrician again for something unrelated, he expressed more concern and asked if we saw the derm yet and to make sure we give him the updates after we do. He said the coast of California thing is not always true and that more than 6 spots regardless of shape warrants further investigation. He also said that such a tiny percentage of people have this many spots without any underlying diagnosis, regardless of their shape. Thoughts? Advice?

Hi NF friends

Sorry for this post but I don’t know what else to do.
I hate hate hate having NF1 so much.

I’m in my 30s and struggling so much with the cNFs. This, from what I’ve seen in other posts, appears to be the biggest struggle for us. No pregnancy yet, yet I’m visibly covered in the tumours. This probably started around late 20s when more started coming.

How do you all cope?? Seriously, I don’t know what else to do. Knowing it will get worse, and there is nothing I can do to stop it.

I can’t find any clinical trials that seem to be ongoing either for this which makes me feel completely hopeless and helpless for the future. Like, so once the bumps pop up on your body, you’re screwed basically because removal is cosmetic? Then what else are we meant to do?

Anyway - point is, how do you do it? Would it take someone to end their own life due to NF1 for more action to take place? Sometimes I wonder this.

Thanks

Hi! I'm new here.

First of all, sorry if my English is bad. It's my second language.

I am 35y Asian Female. Have NF1. My parents don't have NF, so it was just random for me.

I don't know any NF1 community in my own country, so I want to ask few questions here.

> Has anyone of you has really intense dark undereye (dark circle)?

I have very intense dark circle. Some doctors said it might caused by my allergy. But as far as I remember, I did not rub my eyes like what they said. Of course I rubbed my eyes when I feel tired or itchy, but not repeatedly. I read someone said "everyone who has NF1 has dark undereye" but not sure it's true.

>Easily get tired / losing strength

When I say this, I know many people might said I might need to worry about something serious, like cancer or tumor. I got checked(MRI and CT) recently and they said I have nothing to worry at this point.. So I hope they checked everything correctly. Anyway, I get tired quite easily. Maybe I'm just weak?? 😂

Sometime, my leg lose strength and my knee slightly buckle. But not until I fell down. I always get back my balance right away. This things happen to me frequently since I was a teenager. I would say 1,2 times in 3~4 months?<-Not sure this things are common, or it's just my thing because I am quite clumsy and was a bad student at PE class.

Other than that, I think I'm quite Okay.

yes. I have café-au-lait spots. But I kinda like mine because I think it's unique.

:Just for fun. I have quite large one on my knee, and it looks like US territory without Florida.

I have fibromatosis especially on my stomach and my back. and I don't like them, but nah, if it's something that I cannot change, I think should deal with it.

Hello NF community

I have a fibroma inside on my middle finger. It is after my knuckle but before the first bend on top. Anyways, I was washing my hand 2 days ago and I accidentally made it pop out of place and it moved to the inner side of my finger. I freaked out and pushed it back. Now I cannot bend my finger and my hand and part of my arm has nerve pain up to my shoulder.

My question is has anyone went to an urgent care or er and had them cut the fibroma out or off due to the pain? Or were they referred to a plastic surgeon and sent home? It hurts a lot and I don't think I could wait months for an appointment especially with my finger swelling up slightly.

Thank you for your time and response to whomever can help.

to my fellow nf warriors who have visible bumps / visible many bumps on their body, have you guys ever tried online dating? did it work for you guys? and if yes how did they reacted after seeing your body with neurofibromas? (hoping it's all positive)

As my previous posting history, I have new lumps arise all the time. Sometimes areas will be like a burning pain other times not so much. I have had a new one grow on the back part of my right rib but more to the side of my body. Recently it’s caused terrible shitty pains but I’m unsure if that’s from activity or not as well as general stretching.
In Jan of last year I got one in my abdomen and the same type of pain occurs. I get that this could just be that they are subcutaneous and are most likely benign as I’ve had these for ages and nothing has seemed to worsen. I have an NF appt in OCT but I’m just worried that what if these have been malignant for so long and the continuous waiting has made this turn into something from a quick surgery into basically life or death

I apologise for being so grim

My NF was a spontaneous case, no family history of it and they believe that my scoliosis was due to my NF.

I’m wondering if anyone else has had any issues from extended back brace wearing. For context I’m 35 and wore a back brace for scoliosis for several years when I was an early teenager. Middle school through most of high school. I basically had to wear it all day every day. It was a Boston brace, with part of it covering up my left hip/buttocks.

Once I was cleared to stop wearing my brace, I noticed that my left hip/buttocks area was very (for lack of better words) squishy and had low muscle tone.

I’ve spent the last decade or so being super self conscious of how “weird” my left hip/buttocks area looks compared to the rest of my body.

No matter my weight or how in shape I am, the left hip/buttocks area doesn’t change.

Looking to see if anyone has had a similar issue

I don’t want to sound like a jerk or come off as insensitive but the best way to describe what it looks like and feels like is the flabby skin areas that result in extreme weight loss.

Anyone here who works out with nf1 and takes creatine? Is there any side effects? I fckn hate this disease we always have to be careful to everything

you guys ever had a bad encounter? like people maybe saying things about your nf or like saying something after you walked past by them or just hearing them say something bad or mean? how did you deal with it, did you ever forget about it?

38M. Recently diagnosed with a small-ish acoustic neuroma on the right. I recall having had a benign tumour relating to a nerve removed from my right thumb when I was about 16.

So I’m guessing mosaic NF2.

Gonna be a while before it all gets diagnosed properly but I can’t really explain the same sided nerve tumours and my age any other way. Not sure what to expect, I went from thinking I was an entirely well person to this in the space of a few weeks.

Hi, I’m 22M and was told in late June I seemed to have Neurofibromatosis type1, then saw a letter from the hospital saying “patient has been diagnosed with neurofibromatosis, likely type 1”. However I received a call today from a neurologist who has said it’s not confirmed and although it could be, it could be other things. For context I have many small (roughly around 2cm) tumours from my neck, down my spine and pelvis. The neurologist however made points of me having no cafe-au-lait spots, unusual freckles and other things that may come with neurofibromatosis so they think there could be other possibilities for these tumours. I was just wondering if anyone else has no visible tumours and no other signs yet have been diagnosed with NF? Or is it really uncommon to have what I have and no other signs if it is NF? Thank you.

Hello there. My nephew who just turned 21, was just diagnosed with NF2 and has 7 tumours. 4 are in his brain and 3 on his spine. He came home because of back pain in May from work. The pain then till now has gone up to almost unmanageable. They are getting nowhere with no treatment yet. Is there any where that he can get in and pay for radiation or something for this turnour? The system is not working for him. He is in Ontario. Does anyone have any information please? He is terrified that they will operate on him and he will end up paralyzed.

Even with all the pain he is in, he went water skiing the other day because that's what he had to do. Then he went home and slept till the next day... he is a strong willed person. He has tons of support and can fight this, he just needs help. Thanks in advance.

Hello, 22M and I was went for a mri in June on my lower spine due to bad leg pain over the last couple years, before this MRI I had physio and the problem they seemed to point to was Sciatica, however I just felt something wasn’t right so I pushed for a scan. A week after my scan I found out they found tumours and I was told it was suspected neurofibromatosis and there was a letter saying I was diagnosed with NF. Due to the mri being a “lower lumbar spine” scan I assumed this tumours were just on my lower spine. However, a couple days ago I could view the notes of the findings they found on the mri and it turns out I have multiple on my neck, multiple on my spine and pelvis. I also had a call with a neurologist yesterday who told me it may not be that NF but there is a possibility. So after being told NF and just thinking it was on my lower spine, I was still quite shocked with the news and took me a few weeks to get to terms with it, however I now know they are elsewhere and have no specific diagnosis I feel a bit worried and shocked again. I can’t help but feel I’m being dramatic, maybe it’s because if people look at me they can’t tell due to the lumps being non visible?. Like I say, this could be NF it might not but it is at least something similar, I’m just wondering if the people who were diagnosed at an age they remember how did you feel about it and did people feel similar?

Hey all. I got NF1 and finally got an appt to see a specialist in October. However, some of these lumps have been scaring me. Under my neck (that flat part under your face before your neck) I have one little lump that moves around easily but then I also have about 3 solid ones that don’t move at all. I also have a crazy pain in my back right where my ribs are and have a small lump causing pain. Also. Where my knee bone is but on the right side of my right knee there is a mass of sorts which if I put pressure on it I feel a pain radiate down to my ankle. I got that scanned ages ago and they were just like ‘oh? What’s that? Anyway’ and nothing else. I have some digestive issues too (floating stools) however only another ‘concerning’ symptom or two that could be cancerous. I’m 21M and I’m just so concerned I have cancer especially because of my terrible terrible diet these last 18 months and I fear that also having NF has essentially caused me to have cancer

Sorry for the rant