Confirmed cases of NF1 and NF2

• By amanda509
• Posted June 30, 2009 at 7:55 pm
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my youngest son who is 8 was diagnosed with nf at birth i have 2 older children 12, and 10 who do not have nor show any signs of nf, my self and my husband do not have nf either, my son w/nf had the same doc from the day he was born he didnt tell us anything about nf, what it is what it does ect ect all he said to us was watch the cafe au lait spots and count end of story so as he got older and started getting more spots we went to his doc still not helpful, so i did research on nf, switched his doctor and got set up with all the right people and we are in the know now, i guess his was a spontaneous mutation in the gene nobody in my family or dads family has it or even carries the gene, i am still so confused

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• By Markjh
• Posted June 30, 2009 at 8:01 pm
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I was diagnosed with NF1 many years ago, and with bilateral acoustic neuromas a couple years ago. They had been there for several years but too small for a definite diagnosis back then. They are still tiny so I just keep a watch on them.
Mark

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• By yvonnefoong
• Posted July 1, 2009 at 4:58 am
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Basenji53, I did not follow the subject of one person claiming to have both NF1 and NF2 so I am not sure what the issue really is. But having said that, I think you might be right. Maybe people are confused when they discover that they have more CAL spots than others. Or if NF1 patients find that they have a lot of central nervous system tumors.

But I can be wrong.

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• By Santel
• Posted July 1, 2009 at 9:35 pm
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There is a lot of confusion about this even on sites like this where people have either NF1or NF2 and have done heaps of research. There are still a lot of unknowns with NF and in the future a common link may be found in, say, the cause of gene mutation, etc.

A general guideline is:
NF2 rarely has the cognitive problems of NF1
Nf2 tumours rarely become malignant
Nf2 has less cafe au lait and rarely lisch nodules

Note the 'rarely', so this is just a guideline.

A common and confusing symptom is spinal tumours.

Hope this helps

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• By russcape
• Posted July 3, 2009 at 11:43 am
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Hi;

I wonder whether the occurrence of any ( two of ) , as 1 acoustic neuroma and spinal tumor(s), would give a definitive NF-2 Dx? I think so...
The AN would be a schwannoma, and the spinal tumor(s) most likely, ependyoma(s).
I think the 2 conditions ( NF-1 and NF-2 ) can exist simultaneously, but even more rarely so, and one does not cause the other, as are different chromosomes.
Re; Cafe au lait, I believe NF-2 usually presents with less than 10 to 0 spots.
Re; Cognitive issues related to NF-2, I suppose that would depend a lot upon the severity of motion intolerance. Cognitive issues are common to NF-2ers. See Dr. Kenneth Erickson's lecture, " Cognitive Aspects of Vestibular Disorders".
Best wishes to all in this day! : )

Russ

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• By aumsville
• Posted July 3, 2009 at 12:27 pm
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According to my son's geneticist, people with NF2 don't have as many CLS on their skin, at least, that is what I understood. People with NF1 have more. I heard of someone who has both, NF1 and NF2, but I think that is extremely rare.

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