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Which are the symptoms of Neurofibromatosis?

Symptoms of Neurofibromatosis reported by real patients, from the most common to the most limiting, plus a medically reviewed summary with sources.

Neurofibromatosis symptoms
5 answers
First of all, there are there are three different types of Neurofibromatosis, NF1, NF2 and
Schwannomatosis. Each condition has its own set of symptoms. Many of the symptoms are related to the nervous system. People with NF are at a somewhat increased risk for cancer. Many people with NF1 have 100's if not 1,000's of visible tumors all over their body. The severity of NF can vary widely from person to person. Unfortunately, not much can be done to prevent symptoms of NF. It is very important to have knowledgable doctors that can followed patients with NF closely in order to find problems that can be treated before they get worse.

Posted Mar 4, 2017 by Debbie 600
Translated from french Improve translation
the worst ??

Everything is worse ... tumors, gliomas, scoliosis, plexiform .....

Posted Sep 28, 2017 by aurel 1320
Translated from french Improve translation
The characteristics of the disease are defined through :
- color buttons "café-au-lait' ;
- gliomas-optic (tumors at the level of the nerve roots of the eye) ;
- nodules of Lish (hematoma pigmentant the iris of the eye) ;
- neurofibromas of the spinal nerves, and peripheral devices ;
- with neurological and/or cognitive ;
- scoliosis ;
- anomalies of the face ;
- malignant tumors of the nerve sheath ;
- pheochromocytoma (malignant tumor located at the level of the kidneys) ;
- bone lesions.

The symptoms

The disease of Recklinghausen affects the skin and the central and peripheral nervous system. The primary symptoms associated usually appear during childhood and can affect the skin in the following way :
- tasks skin color "coffee with milk", of different sizes, different forms and can occur at any level of the body ;
- freckles developing under the arms and in the armpits ;
- the development of tumors at the level of the peripheral nerves ;
- the development of tumors at the level of the nervous system.

Other signs and symptoms may also be significant in the disease, these include :
- nodules of Lish : outgrowth affecting the eyes ;
- Pheochromocytoma : tumor of the adrenal gland, which ten percent of these tumors are cancerous ;
- enlargement of the liver ;
- a glioma : tumor of the optic nerve.

The impact of the disease on bone development, to include a small stature, deformities of the bones and scoliosis.

Posted Oct 11, 2017 by Robert 1750
Translated from portuguese Improve translation
I think that the gravity that it manifest in some people.

Posted Oct 18, 2017 by Maria Eduarda 1000
Translated from portuguese Improve translation
Pain in the nerves insomnia nervousness depression

Posted Oct 18, 2017 by Luluzinha 1000

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Stories of Neurofibromatosis

NEUROFIBROMATOSIS STORIES
Neurofibromatosis stories
Shortly after birth in 1968 Michael was diagnosed with Neurofibromatosis 1 and has undergone 20 plus surgeries. For years Michael had high blood pressure spikes, profuse sweating episodes, pain, panic attacks and more that landed him in the ER and D...
Neurofibromatosis stories
Over the years I have had a few people ask me why I haven't given up.  This really bugs me because there are other people who don't think it is fair that persons with disabilities (or major health problems) get 'special' accommodations, or they thin...
Neurofibromatosis stories
In March 2012 my hearing got bad suddenly in th left ear.  Subsequent tests showed a meningioma as well as a vestibular schwannoma, a classic diagnosis for NF2.  Both tumours were succesfully removed leaving me with facial palsy and balance issues....
Neurofibromatosis stories
I was told at a young age I had NF, nothing more.  As I got older around 18, lumps started to appear on my body.  I went to my doctor he told me he thinks they were NF lumps, he checked to see if I had large brown spots he counted 6 and said they ...
Neurofibromatosis stories
The first time I can remember being diagnosed was at age 10.  I have several small tumors all over, cafe Au Lait spots and a couple of larger tumors. In 2010, I had a GIST tumor removed which according to my surgeon is very common with people with N...

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Neurofibromatosis forum

NEUROFIBROMATOSIS FORUM
Neurofibromatosis forum
Has anyone had surgery on their chest to remove tumors inside from nerves?

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