Is there a test for NF2?

[arcteryx]

I'm wondering if there is some type of test, for example blood test, which can detect NF2? Is it possible to develop an AN on one side now and another one on the other side 10 years later, or does NF2 always exhibit symptoms at the same time?

Thanks!

[Cheryl R]

I have heard the test for NF2 isn't real reliable  but I am not sure of this.    I have read more than once that only 5% of all ANs are NF2.          I am one of the unlucky ones.      My first surgery was a little over 4 yrs ago and it was a year and half later that the AN on the other side was found.   I have the older adult onset type.               Last week my MRI was done as I do them at the hospital where I work and take them with me to Iowa City and my surgeon appt next week.   It is looking like I probably have regrowth on my surgical side from the radiologist report.     Of course this has to be confirmed when my surgeon compares the MRIs but there was a size increase which shouldn't be there.               I had mid fossa and he put temporal muscle in as packing.     There was a small increase in the new other side tumor.                         Dang NF2.
                                      Cheryl R.

[Kathleen_Mc]

From what I understand the blod test for NF II is not accurate and often gives false negatives, leading one to believe they don't have it to later develope another tumor and find out they do. I was lead to believe that after ten years post finding an A.N. if the person has not developed any symptoms of NF II or grown another tumor "they" feel it is safely assumed the person does not have NF II....but that's just what I have heard/read. Kathleen

[tony]

I will try and offer a more definitative answer on this one
"is there a test for NF2 ?"
Yes there is - a proper NF2 clinic can blood test for maybe 10-20 NF2 variants/abnormalities
and if they find them, a positive result is confirmed
However there are a further 5-10 variants/etc that will not show up on the test
- so a negative result can be misleading
basically - we did not find it - not, you are clear
It is (thankfully) very rare (1 in 40,000 people - ish??) so its not that likely
best regards
tony

[russ]

Hi arcteryx!

  I've NF-2 and am 56.
  1st noticed dizzy/disoriented feelings at 19. They thought 'anxiety' and gave Valium, which helped.
  The first AN was diagnosed and removed at 27 yrs ( 1977 ). An ENG with calorics balance test showed something wrong the other side but no tumor? Of course, then they didn't have MRIs or even C-Scanners.
  The ANs ( 2 and now, 3 'smallish' ) on the other side were first seen on MRI in 1994 ( age: 44 ) and dimissed because of the improbability of the low odds.
  NF-2 Dx was made in 2000 ( I was 50 ) with the added presence of spinal tumors on MRI.
  I've read several places blood tests are about 60% accurate and not relied upon solely for diagnosis. For instance, there once was a young girl on this site who had a large 5 cm. AN at 11 yrs old and another smaller one. She has a Sister who is an identical twin but tests and MRIs negatively for NF-2 as well as the rest of the family.

  Best wishes!

  Russ

[tony]

Hello Russ - there is an amazing part to your story.
Age 27 at first OP etc does rather suggest the "early" type NF2
yet you are still with us 25 yrs later - which suggests "late" type
As we have discussed before - I think there is more to all this than
Gardiner and Wishart - a third type - or more ??
Best Regards
Tony

[Jeff]

Hello all,

My father's first AN was discovered when he was 29, but his second wasn't discovered until he was 41. Mine were both quite visible when I was diagnosed at age 36, as were my brother's at age 31.

As I understand it, if you have a parent with NF2 and there gene abnormatility can be located, then it is possible to check for that specific mutation in order to confirm or deny NF2. This is how it was explained to my brother. He had his blood sampled, and after they were able to locate the mutation, his daughter's blood was tested by checking for the same mutation. My brother was told that this is a conclusive method provided that the parent's mutation can be located.

Jeff