I'm freaking out a little bit here

NF runs in my family. My grandfather had it and passed it onto all of his children. Since I was pregnant with my daughter, I've noticed strange spots popping up. My OBGYN sent me to a dermatologist for it and he claimed he had never seen anything like it in his life and had no idea what it was, so he sent me on my way (reason number 1,896 no one should ever see military doctors).

Since NF runs in my family, it crossed my mind that what I had going on was NF. I've spent the past year really researching it on my own and I've come to realize that I have all the signs of NF. Cafe au lait spots thoughout my body, a few smaller tumors, those "buttonhole" spots you can push in (I saw a picture of someones stomach with those, it looked EXACTLY like my stomach), I'm very short (I read people with NF are typically short).

Now I have a million questions running through my head that I'm hoping you guys can answer for me.

Where do I go from here? What kind of doctor do I go to if I want to see if I really do have NF? I've read that hormonal changes cause tumors to show up (I'm assuming that's why I just started noticing it during pregnancy), will being on birth control or getting off of it or switching forms of it cause tumors to pop up? If my daughter has most of her father's charactoristics could it mean the NF will pass her? If she doesn't get it does that mean there is no way her children could ever get it (unless their genes mutated on their own obviously)? What can I do to help tumors from not growing? I've read that tattoos can cause tumors to pop up faster than they would have, but I have a sleeve and a few other tattoos and since getting them I haven't noticed tumors popping up faster. My mom died of leukemia when I was 2, did NF have anything to do with that? Is there anyway I could be wrong about all this, and the spots showing up are just a coincidence?

Sorry for the length of that. As the title says, I'm freaking out about all of this.

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Wow that was how I found out I had NF1... I always had the birthmarks, in my 2nd trimester I started to get the fibroms all over.... now I have 3 boys and 2 of them have NF1 but they only have birthmarks now.... I dont know if it was the hormons or the weight gain that made all the fibroms pop up? But keep ur head up.. leukemia my niece passed away when she was 7. But it had nothing to do with the Fibroma....
As for the Tattoos Iove having them because you cant see them, and when I go I just tell the artist its a birthmark above the skin.... too much sun I say. It's just hard Explaining the whole NF1 thing. You know?

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ps, I dont knw everything but enough.......so ask me whatever you'd like.

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Hi welcome to the group.

You say that your grandfather gave NF to all of his children so I assume that means that your mom had NF signs as well? As you can see by the criteria listed below a first degree relative is one criteria for NF. Therefore if your mom had it then you need only one more criteria to be clinically diagnosed with the disorder. It sounds like you have multiple CALS therefore assuming you have the correct number and size of CALs you can clinically be diagnosed, regardless if the other things are tumors or not.

Six or more café au lait macules larger than 5 mm in greatest diameter in prepubertal individuals and those larger than 15 mm in greatest diameter in postpubertal individuals
Two or more neurofibromas of any type or one plexiform neurofibroma
Freckling in the axillary or inguinal regions
Optic glioma
Two or more Lisch nodules (iris hamartomas)
A distinctive osseous lesion, such as sphenoid dysplasia or thinning of the long bone cortex, with or without pseudoarthrosis
A first-degree relative with type 1 neurofibromatosis according to the above criteria

When someone has NF they carry a 50% risk of passing on the disorder to their children. Your daughter could have many of your husband's characteristics and still have inherited the mutated NF gene from you. If your daughter doesn't have NF then she can not pass it on to her children. If she does have it ,there are several options available including PreImplantation Diagnosis where they screen for NF and implant only healthy embryos, testing during pregnancy presumably with the idea of terminating, having her own children or adopting.

The issue on birth control is debatable. Some have noticed an increase in tumors but many have not. Recent studies suggest that the formulation of the birth control used may be relevant and that those with high levels of synthetic progesterone may contribute to tumors. The hormones and NF debate continues.

In order to be officially diagnosed you need these bumps and whatnots confirmed as NF signs. You may also want to have your children assessed and I would recommend that you see about getting in at one of the NF clinics, or at least in with a Geneticist familiar with NF. There is genetic testing available which is accurate in 95% of people showing two signs of the disorder so if there is any grey area, the testing may be helpful. If you aren't in any hurry then you may want to ensure that you are adequately insured as some people find certain types of insurance are harder to get once an official diagnosis is in place.

JMML a leukemia that occurs more often in NF is one that arises in very young children and is extremely rare. Adult leukemia is not typically reported in NF however there is a genetic loci for one type of adult leukemia AML on the NF gene. This is isn't actually a common mutation in cases of AML but it can happen. Theoretically, if your mom did have NF and her mutation happened to fall into that same region then I suppose that could theoretically put her at a higher risk for that type of leukemia. There are other more rare conditions where CALs and leukemia may occur together but they don't typically have as many CALS as we see in NF nor would that explain your grandfather's NF. So its more than possible that your mom's leukemia had nothing to do with NF whatsoever.

Not sure that helps. You really do need to be examined to know for sure.

I wish you all the best, and please keep us posted.

Cindy

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cindy luo said it all
I gre up as an Army officers kid always got the best of care . MY NF's got worse when i had my periods and also whenI was Pg too. our sonsa re now 31 and they onlyhave afew frecklesnd also a few lumps as they call them.one hasa step daughternd panning on marying once they ever fnish college, the toher one (twins yes) has some spots too ur grand daughterhas alot of freckles ata ge 4 1/2 then our soon tobe other grnd daughter who wilbe born sometime next month we donot know nothng about. My mom, grand ma allhad NF even my twion brother nd Ihave it it too. My Dr at the teching hospitial i go to toldme that being PG, havng period, peri memopause then menopausenad even Birth control can cause the tumors to grow.I go to UF&Shands YEAH!!! and Peggy wallace is a swwetheart too she nkows somuch abut Nf too she is a Prof. who teaches on thatand fibromyalia which i also have. but calm down those stres hormonesarento good for the baby yu are acrrying. ask to go see a neurologist who speclaizes i NF and ask him tell him of the Grand dad having it too ok bt calm down think of yur baby yu are carrying it snota detah sentece i will son be duuble nicj kles next monthnad my mom lived past 60 but died of aheart attack like my twnbrother did. my dads sisde of the family died of stroke Ihave major heart troublenot linked to NF myDr's have toldme that sigreat too.

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Thank you!! I feel a lot better just talking to people who are going through the same thing.

I was talking to my husband about it, and he doesn't think seeing a neurologist (I'm assuming that's where I'd go) to get officially diagnosed would serve a purpose since I have all the signs, it runs in my family and once I find out for sure I have it there isn't anything I can do.

Also, by the time my grandpa was in his 50s or 60s he was completely covered in tumors. Face, arms, legs, body...all over. Does the severity of things run in the family too? Could I have it that bad when I'm older? Right now I don't have any large tumors, one on my neck is about the size of a pea...that's the biggest.

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Every case is difference even with in a family. My 2 daughters and my husband have NF1 and they are all affected differently. No one knows what the future holds. My husband is 47 and has a few very small fibromas but who's to say a month, a year, or 5 years from now he wont grow more. Who knows what will happen when my girls hit puberty in a few years what will happen. This condition seems to be very unpredictable.

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NF is very variable even sometimes amongst family members. One person can have many tumors, someone else only a few and in some families multiple generations can be affected in roughly the same way...it's impossible to say with any certainty. NF is also progressive. I see from your profile that you are still quite young, sometimes tumors do increase more rapidly in the 20's and 30's but again there is no way to predict with any reliability when or how many a person will develop in their lifetime.

If you are not going to be seen by a Geneticist or Neurologist then it is crucial that you get monitored for high blood pressure and that you do get seen if you develop any neurological signs...headaches (which occur in NF but can also herald more serious problems), unexplained pain...anything out of the ordinary. NF can be a fairly benign condition or it can be more than that so just ensure that you are taking good care of yourself and not ignoring any problems.

All the best,

Cindy

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Iam the only one in my big family with NF1..I have 7 brothers and sisters 30 nieces and nephews...No one has this but me...It also stops with me..we decided not to pass it on and on and decided not to have children because of this..The only was to stop it.

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I have NF1, and really want children. Would do it through IVF and PGD. But really DON't want my NF tumors to get worse. I've had about 5 things removed during my life ( 37 now), and about to have more ( 20 or so ) fibromas removed off my breasts ( very scared about that. I hate operations and needles and scars. Having Nf that is a part of my life though. I dream about having smooth skin. I know getting pregnant will likely make my NF make my NF worse, and that it's a progressive condition anyway, ( which I'm beginning to notice). I used to be strong about this whole thing; but the older I get, the more things I have removed, the more I think about having my own baby or not, the harder it all gets. My family REALLY don't understand. I have a boyfriend who says he doesn't mind; but it's not fair for him to be with me, as I gradually turn into a big lump. I can't do that to him, he deserves better. My only solution is to become a hermit or jump off a bridge. Dr Weinberg is not a solution. ( Too expensive for a Canadian, risk of scar too much). I am sooo depressed about it all right now.

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sometimes I wish I wernt born,in fact my mother didnt know she was pregant with me til she was almost 8 months along.I wasnt planned at all, I was a mistake, I was told by an eye doctor at age 8 I have NF, What else could go wrong for me.
sorry,just had to vent.

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this is another thing that went wrong for me today, MY BOSS is gonna fire me if I get anymore complaints. I am sitting here now crying my eyes out, I cant stop.
IF it wasnt for a boss I really like I would just quit before they have a chance to let me go, this manager that wants to fire me is a woman I dont have an easy time with them,I really miss the old days because back then it was all guys as my bossess

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