Is ther anybody with neurofibromatosis, and how do you feel about it?
969983
My boyfriend has it, and he's gone through a lot.  Many surgeries over the years (and he's only 29) and a rough childhood with teasing and hospital stays.  I think NF ultimately produces some incredibly brave people, who have been through a lot.  Right now we're dealing with a particularly difficult obstacle that NF has put in front of us.  What I think now is... I'm glad I've found people here talking about it and I hope awareness increases.  And, of course, I hope for a cure.
392484
I have schizophrania and I don't feel that way.\n\nBig Brother!!
1140861
Yes....so many times that I can't even count....take relief in the fact that you are not the only one.....actually by reading your question and reading what everyone else replied with....I feel much better because it reminds me that I'm not alone in my feelings...we ALL feel that way at one time or another...some people are soo much more sensitive than others, in a lot of ways...it really **** but I wouldn't want to be any different, I like that I FEEL.....too many people are on autopilot these days....not me, I NEVER want to be that way....Thank you for making me feel better, I can only hope that you too will get some relief in knowing that you are not alone.\nThanks everyone out there who responded to this question....you are ALL great!!!!   I love this site!!
49805
I have MS, for 8 years now.\nIt's a real pain in the a.., as you already know!\nHave problems with my legs (damn, they dont listen to me like they used to..hehe) and I believe you know all about those mood swings, that can occur every now and then :)))\nOther than that, I'm one pretty optimistic gal :)
543206
I am 33 as well. I have fibromyalgia and osteoporosis. I have two girls and two step girls and two babysitting kids, I also go to school full time. Sometimes, I feel great- but then other days, I feel like I am my own grandmother. Especially in the mornings. My husband is already making plans for when we retire- we will be snowbirds- in FL in the winter, and MI in the summer. I am always cold, even in the springtime. I wear sweatshirts all year long. It is part of having fibromyalgia.
336817
I hear where your coming from.  You have cone to the point in life when you feel no longer like superwomen.  I felt the same way. now i'm 48 and new disease's is what my doctor has discovered. Lupas, diabetes and everything else is going wrong. I have depression too, I feel isolated.\nBut my feeling are like this, God is in Controll of my self being, even though I've had to slow myself down quite a bit.\nI have learned to seek out Nature, take pictures, paint\nshells and leave a few for other people to find on the beach. Especially the kids to find something pretty that they can take home. do things that give back to nature.\nYou will feel yourself at your very best. I wish you well, and let happiness shine thru you. Prayers to God will really help you to get ready! God Bless you Spiritually!
918253
Dont feel bad my friend. I am 35 and aunt Flo stays with me on a constant time period. I may stop a day or so then flood over and over. I think I may have fibroids or hardening of the ovaries, but who knows. I dont have children, nor do I plan to. I want a partial historectomy becuase i am sick of this mess. So dont feel bad, all we band of women understand...the gulf is with me also.
53464
I think its sad to see anyone suffer with a terrible disease that comes from something that he did to him/herself.  Especially when they started doing that thing before they were old enough to understand the possible consequences.\n\nYour friend has my sympathy.
921816
In a way yes I feel like I have no rights. As a child I was diagnosed with 2-3 different disabilities, but they are considered mild or slight, meaning that I'm still mobile, and somewhat mentally capable, according to definition and I often feel like life has dealt me a hard blow. I feel like I can't really enjoy the basic pleasures (and even displeasures in life:) LOL. People have all these preconceived notions about you and don't give you a chance in the social and economic. Luckily I have made good friends in my life but I've had my share of bad ones, and not all the good ones were disabled and not all the bad ones were completely fine either but it's a really hard road. It's even hard for me to answer this question. I know that I diagnosed and labeled disabled by professional, but am I really? What's considered normal, and why must the "normal" people feel they have to label "weird" quirks. And I know some people like the benefits they get from being disabled, but I don't want extra help from the government. I've been lucky to almost finish college, finish high school on time without skipping a grade, and very few of my classes per year while in high school were special ed. On average I only had one or two special ed classes. And I am considered exceptional for someone in my conditions but I always feel like I could better and I expect good things, extraordinary things out of my life. Some things not even a normal person could receive. I have been lucky to have worked before but people aren't kind. And I think it's sad that the average disabled person can't make a good living.
95066
I feel for you, if you want to talk about it e-mail me ehuff79@yahoo.com
451581
a friend of mine was wrongly committed to an institution. he told me that the electric shock therapy that he received would render him unable to talk, he could hardly move afterwards, they woke him up every morning at 5 and strapped him to a chair and shocked him. His family would come to visit in the afternoon, he would sit in a chair unable to talk to them, unable to sit up straight, they would ask the doctors what was wrong with him, the doctor would shake his head, and they would walk away and cry and he would cry. \n\nI feel deeply sorry for anyone who has undergone this sort of thing.
930353
I have family members who have passed from it.  I do not live in fear because there is no sense in living in fear of something that you have no control over.  It is a very scary thing... and it saddens me deeply... i think cancer makes me more angry than anything.
932465
HI Angela are you under alot of stress/pressure at the moment and feeling tired or overcome even with simple things. Has your weight changed recently and did you get you blood sugar levels checked recently in case of diabetics.\n\nHave either your mother or your young sister ever presented similar symptoms as to the dizziness, blackouts foggyness forgetfulness and feelings of unreality.\n\nYou don't mention having pain or feeling fatigue or sickness. I have the symptoms you explain except the blackouts and other smyptoms. I have also pain that migrates fatigue sickness and mood swings and numbness. I am diagnosed with Fibromyalgia/ME since 2000. I know other Fibro/ME suffers who have regular blackouts with the symptoms you present plus pains fatigue mood swings and numbness. \n\nThis is difficult to diagnose and nothing shows up on scans etc which can seem to the un trained lay person or doctor in some cases (all in the head and the patient is depressed or lazy)\n\nTry to relax a bit and not dwell on this until you get the results of the brain scan back I know it not easy for you but worring can't do any good.\n\nTake care around machinery and do not drive and take it easy hubby's can some times make you feel worse at times like this if they don't support you or have compassion. \n\nAsk him to help out more and not hurt it doesn't work explain to your young children that mummy is feeling poorly and loves them very much but just needs to go slowly and cant rush about like a bat.\n\nHope you get the help and answers you require to take charge of a very frightening situtation. \n\nTake LOL.
1097758
yes i suffered with this condition as a child and know horrible it is first hand.  I used to have fits in public and it was so embarassing having loads of people gawping at you and calling you a spaz.  I used to take medication for it - the consulant started me on epinutin which made me like a zombie, 3 years after that they changed it to epilim that did me no good whatsoever, then they put me on tegratol which i stayed on until i was 13 and eventually weaned off.  I have now been fit free for 16 years but its still possible for me to have fits but only through severe pain its just lucky i know the warning signs, its different for each person but for me firstly i get a ringing in my ears ( like the ringing sound you hear when you switch on a TV) then my head goes all fuzzy, i start to see starry patterns in front of my eyes, then the ringing gets louder, the fuzziness gets fuzzier then nothing just blackness!! i hope i have been of some help, but there are plenty of websites offering a wealth of information, the british epileptic association being one of them, i just wanted to share my personal experience of the condition and hope that your friend is ok.
709895
awwwwwwwww, i love your pics. :) i feel the same way. :)\n\nbut there are others for me, that i feel are also sad and stuff.\n\n*ill post pics later, cant right now
791726
I have NF1, and have a number of neurofibromas at various places of my body.  I have had several cut out over the years but as you know, new ones will form from time to time.  Since the condition is genetic, I do not think there is an alternative medicine that can help... but I have researched high and low.  I share your stress over wishing there was a way to make the bumps go away.  Depending on if the bump is more on top of the skin or below, some have found success with laser treatment.. but regardless of how the tumor is removed there is usually a scar.  For me, every few years will have the doctor remove the largest or most visible ones.  I pray that you can still find peace in that you are of great value and worth as a person despite the imperfections.  I wish you the very best.
974094
I feel for you. I have the same problem you have and I have refused to use medication. I've got a great husband, great kids and no reason to be depressed but I am. I've been taking fish oil and I am reading a book that comes with a workbook called battle of the mind. Great book. It's been working and I actaully feel motivated and I have been feeling less depressed.