Brief Answer:
See below!

Detailed Answer:
Hi and thank you so much for this query.

I am so sorry to hear about your symptoms and the ongoing challenges with NF1. This is for sure very concerning to have several different neurological symptoms that have not been explained entirely and no complete management plan spelled out. At times, when our difficulties cannot be easily resolved, more understanding of the condition would help lessen our worries and improve the management of our symptoms.

With NF1, neurofibromas develop almost everywhere in the body beginning in childhood. Should these tumors develop on the nerve that control balance and hearing(more common with type 2), you would experience these symptoms. This this MRI look at possible acoustic schwannomas(non cancerous tumors) along the path of this nerve and the base of the skull that could explain this condition? Also, is your hearing intact? If that is not the case, please ask your radiologist about this possibility.

Treatment of complications related to this consist mainly in modifying our various lifestyles to minimize symptoms and prevent possible complications resulting from them. In extreme cases, surgery is recommended to remove tumors present around nerves or in the brain. However, they all carry potential risk of other nerves damage and hearing loss. As long as you can tolerate these complications without greatly compromising your quality of life, I will suggest that you don't consider this an option.

Did your doctor look into the possibility of these various white patches being suggestive of multiple sclerosis? The diverse nature of your neurological symptoms that cannot be explained by a single nerve lesion alongside the finding of these multiple white patches should raise the possibility of this diagnosis.

In all, the balance may be due to tumor growth around nerve from the neurofibromatosis. Also, these white patches and you diffuse neurological symptoms should be considered for multiple sclerosis and looked into.

I hope this helps shed some light on your condition and provides some information to act on. Let me know if you need any clarifications or more information on any of the content I have provided. I honestly hope a cause to this can be identified and you managed properly.

---

Brief Answer:
Very unlikely at 52 to be age related!

Detailed Answer:
Hi and thanks for this follow up.

It would be very unlikely for these patches at 52 to be related to age. With all these symptoms that are diffuse with MRI findings suggestive of white patches, I will suggest that he consider other possibilities and only settle on that should there be no other explanation.

Talk to him and ask why he thinks it could not be any other disease condition like multiple sclerosis. Maybe he has a lot more information and backing that we do at this time.

I hope this helps. I wish you well. Feel free to ask for more clarifications and information as the need arises.

---