Brother Came Down With Neurofibromatosis In His 30'S

[janiedelite]

My brother had his first neurofibroma removed surgically from his ulnar nerve a few years ago when he was 32. He didn't have the diagnosis of neurofibromatosis yet because he only had one tumor until now. He's had another mass grow on one of his fingers this past week, and it looks and feels just like his previous mass. I believe the adult-onset neurofibromatosis is very rare, and he would have Type 1.

I've read that neurofibromatosis has been linked to pheochromocytoma (on Wikipedia). My mom came down with carcinoid syndrome, another neuroendocrine cancer, in her 30's as well.

And I came down with my small fiber neuropathy/POTS issues at the age of 33.

I'll talk with my docs about my brother's neurofibromatosis diagnosis the next time I see them.

Until then, does anyone here know of a connection between dysautonomia and neurofibromatosis???

[janiedelite]

I did find that people with NF type 1 are at high risk for developing carcinoid tumors in the duodenum. But other than the problems that arise if a neurofibroma grows on an autonomic nerve, I can't find a connection between NF type 1 and POTS/dysautonomia.

[issie]

I spoke with a doctor about my POTS diagnosis and he said that in his years of practice - he had found that NF was one of the reasons that people get or have POTS. It was one of the things that it was recommended to me to be checked for. I do have so many tumors all over my body - lipomas, menigiomas, liver - thyroid - kidney. I don't understand all these growths and can't believe that this is normal. I do feel there is some sort of connection and maybe this old radiologist knows what he's talking about with the NF. Time will tell.

[janiedelite]

Wow, interesting! I have a lipoma on my back, hemangioma on my kidney, and a perineural cyst on my C6 nerve root as well as a couple of sclerotic areas on my thoracic spine (which are attributed to arthritis). My brain MRI was normal. Nothing that points directly to NF. Anyway, I have a feeling that one day whatever has caused my POTS will show itself in a way that we can understand.

[Brye]

I just saw a TLC special the other night about this. They were covering 2 patients with a severe childhood onset case. My daughter (6) asked me if this was something she could get. I told her no she probably would have developed symptoms by now if she were going to get it. Guess I learned something new, didn't know there was an adult onset type. Hope his case isn't too severe and he has good treatment options.

Brye