Neurofibromatosis

[GlutenLadYorkshire]

Has anyone had any dizziness and slurred speech from having neurofibromatosis? I had these symptoms last year and they may think it’s something else but I wanted to eliminate neurofibromatosis as a cause.

[hunter5582]

Just came across your old post and don't see any replies. I normally participate in the MPNVoice forum as I have Polycythemia Vera. I am also positive for NF1. I am responding to encourage you to follow up if you do not have any answers. I ignored my NF1 for many years as I have always been so mildly affected. At age 63, some 33 years after the NF1 diagnosis was made, I went to see a NF specialist. Though the doc does not routinely do a MRI for asymptomatic patients, I got her to do one due to my family hx of dementia, my PV, and my NF1. Surprise - surprise! I had a large (1.5x1.25x1.0 inch) tumor in my right occipital lobe. It took specialized testing to find the effects, but it was starting to affect my vision. I decided to have it taken out - craniotomy/resection on June 17 of this year. Turns out to be a Pilocytic Astrocytoma. This is the most common type of tumor associated with NF1, but typically found in childhood. Very rare in adults. There are a number of implications for me regarding recurrence of this tumor due to the NF1. it is much more likely to recur due to the NF. It may come back in a malignant form. While Pilocytic Astrocytomas are usually Grade 1 (benign). they can turn malignant. Radiotherapy is not recommended as people with NF1 tend not to respond well to it. Tx would likely be chemotherapy with a MEK inhibitor.

I have learned a lot more about NF1, genetics, tumors, and treatment options since this all unfolded. If you do not have any answers yet, please be sure to follow up with a skilled NF specialist/neurologist. What you describe sounds like neurological issues. NF increases the chances of developing central nervous system tumors. Tumors can be accompanied by edema and the swelling can come and go - resulting in variance in symptoms. The sooner you find out what is going on the better for treatment options. Even if this is not NF related, it is something to get to the bottom of.

[GlutenLadYorkshire in reply to hunter5582]

Thanks for you reply very helpful