Neurofibromatosis

[asgotto]

Hi All,

I must say that joining this mesage board really hit me hard after reading your posts. I truly pray for all of you and wish you the best.

My girlfriend (Now 34 yrs old) was just diagnosed with this disease. She went to 5 different docs to finally find out what it was, after the MRI results. I must say, however, that these very minor bumps only appeared in little clusters around her hands and feet. You don't even notice them really. Doc told her to wait another 6 months and come to see if they dissappear or if more appear.

Does this sound right? I noticed that a lot of you said you were covered Head to Toe with the bumps. She's worried, which makes we worry for her, and I just want to make sure she's taking the right precaustions. Any advice would be appreciated.

[snowbear]

Hi and no it dose not sound right, seek another opnion please.

[ednlor07]

hi, me and my 4 children have nf....it's not a fun thing to go through and most of the doctors act like its no big deal. she should really get a doctor that wants to see her more often and one that wants to check her long bones and stuff more often. i dont know where you are from but geisinger medical centers are awesome. there is also an nf site on here that keeps you posted on updates. im sure you read up on it after she was diagnosed with it and you have come to realize there is no cure for this illness but many people live long and normal lives with it. there is an nf foundation but i cannot remember the site if you look on here im sure you will find it. depending on where you live, they have alot of things going on that you two can go to.....the only other thing i can tell you is read, read, read.......and get a good doctor.

[snowbear]

Reading about NF is a good idea. But it can be overwhelming. Don't over read it as some information is misleading. Take it one step at a time.

[itsmefrnz]

Well i don't know much about this disease but one thing I would say that NF sign would not disappear as doctor said...u should go for 2nd opinion for her or consult doctor properly or keep reading articles over net (I could understand this disease only thru net, my doctor spend only 5 min to tell me about it).

Also keep asking questions from doctor about it , coz they simply say its not curable but still we can go with regular treatment.

Do you know whether its NF type1 or type 2 ?

Good Luck !

[dawnhol]

hi my father,son and I all have nf, they probably will have told you to wait 6 months to see if any more appear,as at times of hormonal change ie, puberty,pregnancy etc, more marks and bumps etc are likely to appear, if you are worried go back to see your dr who should be able to let you know all the info you need