Has anyone heard of neurofibromatosis?

G'day JLady412,

Thank you for your question.

Yes. Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. The tumors can grow anywhere on or in the body.

Joseph Merrick, the Elephant Man, was once considered to have been afflicted with either elephantiasis or neurofibromatosis type I. However, it is now generally believed that Merrick suffered from the very rare Proteus syndrome or perhaps a combination of the two conditions.

There are two major forms and one newly discovered form:

* Neurofibromatosis type I (was known as Von Recklinghausen disease after Friedrich Daniel von Recklinghausen). Incidence is 1:3000.
* Neurofibromatosis type II (or "MISME Syndrome"). Incidence is 1:40,000.
* Schwannomatosis is a rare form that is clinically and genetically distinct from types I and II. Multiple Schwannomas (rather than Neurofibromas) occur, and about one-third of patients have these tumors in only one part of the body. The vestibular nerve is spared. Pain is the primary symptom, although numbness, tingling and weakness can also occur. Schwannomas are always benign. Six other, extremely rare, forms are also recognized.

Neurofibromatosis type 1 - mutation on chromosome 17 has the following symptoms:

* multiple neurofibromas on the skin and under the skin
* various other skin phenomena such as freckling of the groin and the arm pit
* a predisposition to particular tumors (both benign and malignant)
* the presence of 6 or more Caf茅 au lait spots (pigmented birthmarks) may suggest the presence of this condition
* skeletal abnormalities such as scoliosis or bowing of the legs might occur
* lisch nodules (iris nevi)- a hamartoma of iris
tumor on the optic nerve.

Neurofibromatosis type 2 - mutation on chromosome 22 - has the following symptoms

* bilateral tumors, acoustic neuromas on the vestibulocochlear nerve
*the hallmark of NF 2 is hearing loss due to acoustic neuromas around the age of twenty
* the tumors may cause headache, balance problems, and Vertigo
* facial weakness/paralysis
* patients with NF2 may also develop other brain tumors, as well as spinal tumors
* Deafness and Tinnitus

Schwannomatosis - gene involved has yet to be identified - have the following symptoms

* Multiple Schwannomas occur.
* The Schwannomas develop on cranial, spinal and peripheral nerves.
* Chronic pain, and sometimes numbness, tingling and weakness.

About 1/3 of patients have segmental Schwannomatosis, which means that the Schwannomas are limited to a single part of the body, such as an arm, a leg or the spine. Unlike the other forums of NF, the Schwannomas do not develop on vestibular nerves, and as a result, no loss of hearing is associated with Schwannomatosis. Patients with Schwannomatosis do not have learning disabilities related to the disease.

I have attached some sources for your reference.

Regards

No

yes, its painful, hard to diagnos, no one beleives you when you say you have it, and its hard to treat, no one has any good treatments, why? you have it? its as hard to live with as neuropathy, which i have, which may be a prelude to MS. you can email me if you wish.

Yes, there are two types of neurofibramatosis. It is a genetic condition and may be associated with a number of different benign (non cancerous) tumors, birthmarks called "cafe au lait spots" (light brown, flat, spots), and a few other things.

Note: Tally M--> you are speaking of fibromyalgia...not neurofibramatosis...they are different disorders.

no

yes, but i don't remember where. must have been on tv.
hey here's a link i found
http://www.ninds.nih.gov/disorders/neuro...

Not only have I heard of it I HAVE it.

I have multiple neurofibromas, mostly on my chest. I have a large one above my left eye. I had it cut out, or what the doctor could do, in the early-mid 1980's. Sadly it grew back twice the size it was. About two years ago I was told that my job was going to end by June. In May I had it removed again. (Hey, what good is health insurance if you don't use it? The doctor deemed it medically necessary asit was impacting my ability to see clearly.) This time it looks much better.

My nf also gave me a pseudoarthrosis of my right tiba. I had to have multiple operations to fix that throughout my life, mostly consisting of a rod to keep the false joint in place. By a freak accident, I broke the rod in 1984. They did multiple surgeries to fix it but it took over five years, yes, five years, of being in a cast. The last operation at that time was a fibular transplant from my left leg to my right leg. Since that time I've had two other less sever problems with my leg. Once I broke my leg in my sleep. How? I still don't know. They didn't operate or put me in a cast but I was on crutcehs for six months. About two weeks after my last surgery to remove the neurofiboma above my eye I fell on some wet pavement and broke my femur, which the doctor said was weaken by the nf. I was on crutches for about six months then to.

All this is probably more than you needed or cared to know but you have to know that nf does not have to rule your life. Those five years I spent in a cast, plus an extra six months when the last cast was removed, only kept me from taking a shower, golfing, or driving. I managed to graduate college with a BS and an MS.

I have to wear a brace and my right leg is shorter than the other but otherwise life is managable. I try not to think about it too much.

1more than 6 cafe au lait spots on body.
2.soft benign tumor on body. Its diagnosed very easily successfully, But "NO TREATMENT"
3.If any tumor causes pain if compress the nerve than remove it .or it is on face (surgical removal).
REST......same ALL HAS BEEN DESCRIBED BY cremedelare.....THANKS