Author Topic: Should I get Gene Tested?  (Read 5081 times)

NNanda

  • Newbie
  • *
  • Posts: 1
Should I get Gene Tested?
« on: October 27, 2013, 09:47:06 am »
I am guessing that my mother was NF2 - she had vestibular or acoustic shwanomas and also a meningioma at the brain stem. Her last 15 years of life were dramatically different than all those preceding, based largely on the fact that she had these transient attacks with facial paralysis and drooping on one side, poor comprehension and difficulty in speaking and comprehension. MRI's during these showed no incidence of TIA and she went on largely regarded as having psychological problems. This was odd for a very high functioning and social person with no history of psychological disfunction.
Nothing was done to intervene with the shwanomas or meningioma...they were observed and growing but as is typical, slowly.
This past week I had a very sudden vestibular attack with extreme vertigo and unrelenting vomiting. I was treated with meclazine to relieve the symptoms, and feel better, but not good. I am wondering if, in light of this and my mother's history, there would be a benefit in gene testing?

arizonajack

  • Hero Member
  • *****
  • Posts: 1140
  • Arizona - It's a Dry Heat
Re: Should I get Gene Tested?
« Reply #1 on: October 27, 2013, 06:46:10 pm »
Gene testing is certainly an option and it's up to you if you want it.

However, I'd put that on the back burner and try to figure out exactly what caused your vertigo and vomiting.

An MRI could determine if you have a schwanoma or not and a variety of other tests could determine if some other medical condition caused the vertigo and vomiting.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

tinabean925

  • New Member
  • *
  • Posts: 15
Re: Should I get Gene Tested?
« Reply #2 on: March 03, 2014, 05:45:27 pm »
Any updates NNANDA? I think an MRI is a good idea. You could have NF2 and this could tell even quicker than testing. And if that is what caused your illness it could be progressing! Take care of yourself before it gets worse. Good luck, hope to hear something back from you!

gracey79

  • New Member
  • *
  • Posts: 17
Re: Should I get Gene Tested?
« Reply #3 on: May 19, 2014, 08:58:13 am »
My mother and I both went to a gene testing appointment together...hope your Dr. doesn't talk in circles...ours was literally reading about what an AN was in front of us...AFTER he told us not to have surgery or be radiated...but he is supposed to be awesome in the genetic field.  My mother had the blood drawn about a week ago, it is supposed to take 6-8 weeks to do all the testing.  Due to my insurance having to approve the testing, they are  dealing with getting approval and waiting for my mom's results to get back, then I am supposed to get a price break on the test because her testing will make it easier for them to do mine....I am currently a watch and wait..waiting.  Hope all goes well for you. :)
Diagnosed 2014 a while after mom was also diagnosed with a slightly smaller AN on opposite side(we are not NF2)
4/14   2.0x2.4x1.7
10/14 1.6x2.2x1.5
6/15   1.5x2.9x1.6
8/16   2.8x2.2x1.5
Watch and wait may be prepping for surgery soon 6/17?
Mom of 5
16,12,5,3, 8m

BoedyGirl

  • New Member
  • *
  • Posts: 17
Re: Should I get Gene Tested?
« Reply #4 on: July 14, 2014, 05:36:10 pm »
I got tested a few months ago and just got the results back after I had a 5 cm Acoustic Neuroma removed a year ago in August. I have what is called mosaic NF2 which means the mutated gene is only in part of the cells in my body rather then my entire body which is a good thing overall. I am grateful to know because now I will be given MRI scans at least once a year for the rest of my life and I will be able to catch any tumors while they are small. I would get tested for sure if I were you. Good luck!
 

 


anything
anything