I am 33yrs old and I have Neurofibromitios with lots and lots of tumors some of them being just the sm leisons on the skin tumors running along my spine and also cutting off my sciatice nerve and causeing a lot of pain and numbness of my leggs. I also have different ones in spratic places threw out my body one running threw my wrist sticking out both ends. I have since been diagnosed with fibromyalgia, rls, insommina, apedema and NOW they are trying to say narcolepsy (Im waiting to do another sleep study for this)I have been on or tried so many different drugs to help treat the symptoms mostly that I cant even name all of them and dispite all this I have been doing ok coping with living with this. But now my 14yr old daughter and 13yr old son have both been diagnosised with NF as well. My daughter seeming to have as many problems as me. As of right now she has been having problems with her leggs swelling up to two or three times thier size and is in a lot of pain now we are waiting on the results for tests on lymphoedema and what might be causeing it (best guess at this point is she has tumors growing on her lymphnoids) My hope now is to find a Doctor that will be able to help all three of us and be knowlagable of what is happening to us with the NF as of now I feel like I am a gunia pig and that they are learning off of me. When it was just me I was ok with this hopping that what they learned would help someone elese in the future but now this is also affecting my children and I do not want them tested on or poked at I want them HELPED.
Welcome. I haven't known anyone with Neurofibromatosis before. I gather from your post that you have the Intraspinal tumors as well as the more superficial cutaneous ones. I know that these growths can grow back, but since you are having painful symptoms, couldn"t you get them surgically removed? Is your doctor willing to do this? Are your children having problems with nerve pain as well? You started with the fact that you're looking for a good neurologist - are you seeing one now? Or just an internist or GP? I am so sorry you are suffering so, and I hear from your words the pain of a parent seeing their children suffer. Are you on something for the pain?
My children are suffering due to my choice in spouse. It is tearing me up due to their psychological problems, but also physical. The stress caused many physical problems, and continues now even after the divorce. So, I can't imagine what you must be going through. Although yours is obviously genetically based, your children are lucky to have life and a caring parent!
I wish I could offer more help, but I don't know where you live, so can't suggest a neurologist - good ones are hard to find anywhere. One thing I can say with certainty, however, is, no matter how bad or good a doctor is, we as patients have to be active in our own care. If your doctor is giving you sub-standard care, perhaps he/she would be open to your own ideas about treatment. With hard to treat cases, many doctors accept input from their patients.
Could you give more information about your current medical care? I'd be interested in understanding a bit more about your situation. Know that we care here and would love to offer support. I wish you the best.
thank you for you support and I understand also what your kids must be going threw I have a friend across the street who is now going threw a divorce and her Three year old is suffering bad she is only a month or so into the seperation and already he is showing signs of regression, agression and so forth I did not know this group supported in that as well I think that I will let her know. I wish you the best as well and wish that the kids get thew this well.
As of where I live. I live in Texas and we are military so sometimes we can get limited on what doctors we are sent to (not that we cant get to the doctors we need its just a longer process to get to the right specialest) right now I do not have a Neurologist I was seeing one and he knew nothing about NF at all and I felt like a lab experment with him so I am searching for a new one, one with more experence in NF. Although I do see a Neurosurgen , a pain specialest, and now a sleep study clinic and doctor. As for surgery my largest tumor which is causeing me the most problems has twisted itself around my spinal cord and they fear it has also grown to it I have a 60% chance of not walking after the surgery. Thies tumors are what they call agressive and they are also afraid that if they do get it removed its going to grow back twice the size like the one my wrist did. Right now I was recently switch from Norcos 10/325 to Percotes 10/325 for the pain the Norcos were causeing me for iching then they were pain relif. I am also taking Mirapex for the RLS (although its hard to tell how much is rls and just nerve spasms).
I hope maybe this will help a little more its real hard to put down all the usefull infromation without writting a book lol ...
As for my Son he was seeing a Neuroligist and she deployed to Iraq last summer and we still havent found a new one for him, My daughter was just diagnoised when she started having the swelling of her leggs and she is still going threw some tests (she has had a untra sound of her leggs and us going to have a full MRI with contrast this week) and then they want to find both the kids the same nuero doc. as I would love to have a peds doc for them I would also really like it if we all had the name nuero doc too.
thanks and once again my best wishes to you and your kids
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