Question...new person here and just wondering....

[kelleygirl24]

Hey Everyone,

I'm not sure if this is the right place to post but perhaps it will be! :-) Anyways, I do not have an AN (to my knowledge), but my mother has NF2. I haven't been checked yet....and I'm wondering if I should go to a doctor. I have some odd things going on with me, but I tend to shrug them off as normal things everyone goes through. I get the occasional loud burst of ringing in my ears...sometimes it not loud...and others it'll make me flinch, but it isn't constant..and it doesn't happen every day. There have been a couple of occasions where I'll feel like I have water in my ear...and that will last all day...but it's been a while since that happened. I'll also get some occasional pains...places vary...it just feels like someone pinches/stabs me real quick. (I asked a friend of mine if that ever happens to her, and she looked at me like I was from Mars!!) But, I do have some weird symptoms that are concerning me. I'm tired a lot...my energy is nothing like it was a couple of years ago (and I'm only 24)....I have secondary ammenhorea (for the past 2 years......nada.) I do excercise a lot, but my body weight/fat is most certainly healthy. I also...more recently...will get "dizzy waves." It'll just hit me....I don't lose my balance...but I can't focus on anything...everything is spinning. It doesn't happen that often though.  Lately I have a TERRIBLE time trying to understand people in any setting where there is a lot of background noise. ANd I've been kind of clumsy...but then again...that's always me!! :-p
Are these things that most people experience to varying degrees...or do I need to get my booty to a doctor?
THANKS!

[Joef]

Yes !! get yourself checked .... NF2 runs in families  and ask for a NF2 test ... there is a test for it...

[HeadCase2]

Kellygirl24,
  Reading your note it looks like you already know the answer of whether some of the symptoms are normal or not-- they may not be.  And I bet you already know you should get it checked out.  I wouldn't blame you for perhaps not wanting to know the answer on whether you have NF2 or not.  But you might as well find out.  The sooner any potenatial tumors are discovered the smaller they will be.  And that will leave you with the best options.  You will be in control, rather than allowing a potentially undiagnosed tumor to be in control.  And think how relived you will be if it isn't a tumor.  Best of luck with the doctor's appointment.
Regards,
  Rob

[Jim Scott]

KellyGirl:

To use your terminology: get your booty to a doctor. 

With your mom having NF2 and your weird symptoms, especially for someone your age, I would venture to say that an MRI scan would be in your best interest.  It may show nothing at all.  If so, you'll have some peace of mind.  In any case, fatigue, hearing abnormalities and the rest are not normal and you need to locate the cause so that whatever it is can be addressed.  Please don't put this off. 

Jim 

[linnilue]

KellyGirl:

To use your terminology: get your booty to a doctor. 

With your mom having NF2 and your weird symptoms, especially for someone your age, I would venture to say that an MRI scan would be in your best interest.  It may show nothing at all.  If so, you'll have some peace of mind.  In any case, fatigue, hearing abnormalities and the rest are not normal and you need to locate the cause so that whatever it is can be addressed.  Please don't put this off. 

Jim 

  I'm with Jim all the way.  better to know sooner rather than later.  Good Luck and hope you feel better, Holly

[Samantha n Adrian]

Take not just your booty (that’s not where NF2’s hang out), but the rest of you and more importantly your head, and get an MRI w/ contrast and get one quick.  You want to know sooner than later.  Please keep us all informed.

Adrian

[Raven]

Kellygirl,

Do what Adrian said (BTW, Adrian, you are the man, I've been watching your story)...........anyway, I just found out I was NF2 about a month ago, first thru an MRI of my brain and the one of my spine that confirmed it............please, get an MRI of your head and your spine.

John

[Clifton]

Kelly,

I am 21 years old.
I kept telling myself for almost a year "why do you not have any energy?!?". I had no reasonable explanation.
One morning i woke up and felt the sensation of water in my ear...i really couldn't hear too much out of my right ear. It lasted for a whole week and i went to an ENT. He gave me steroids and it came back to normal. Luckily he asked me to get an MRI done and then we discovered my AN.
Based off what you described, i think it would be a very bad idea NOT to get checked out.
I hope that you dont have to stay here with us and that your MRIs come back clear if you decide to get them done.
But welcome aboard anyways! haha

[tony]

Note to Kelley girl 24:
Must be a worrying time for you
and I hope things work out OK
I agree that, more or less, now, an MRI scan
will settle the current issue one way or another
Its also possible to get the blood checked
- to see if there is a chance of a mishap later on
This test is 60-70% accurate - so a "clear" is maybe not
the end of the story
So (deep breath hear) to be safe and wise
you may consider an annual check-up
say for the next five years would be a good idea.
You need someone who knows what to look for
and what it will take to find it.
Yes its a worry and maybe I am being too fussy here
But 99 times out of a 100 a small problem
is much easier than a large one
and  being prepared with all the right moves place
is a better  option - than a last minute panic.
Talk with your Doc - and diplomatically
try and find out how many NF2s he has treated
- you may be no1 or2 (NF2 is very rare)
If so you might want to seek out a specialist
who has been down the path a few times
NF2 (and ANs generally) are probably the most
misdiagnosed condition there is.
(as many on this list would testify)
On a brighter note please pass my regards to your
mum - and I hope your news is good !
Best Regards
Tony

[4cm in Pacific Northwest]

Kelly-Girl

The symptom you have described is what I had. It took too long to finally find my problem- discovered a 4 cm at age 44.

You are not from Mars (as I think people thought I was- and described my symptoms to them)

GO TO AN ENT AND INSIST ON GETTING AND MRI!
 Be sure to mention the family history of NF2 (Now do not panic you may not have this)

The sooner you get an MRI- then you will have more understanding.

GO Kelly-Girl – get the MRI !

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[kelleygirl24]

Thanks guys for your input. I'm going in OCt to see my gyn about my ammenhorea (sp?) and I know she'll want me to do a CT scan, so I'll probably do that next week as well. (Last time she ordered one, they called me 2 days later and told me to come in...shame on my I didn't, but I didn't have health insurance at the time...) I'll be sure to keep you posted. I just want to know why I feel poopy all the time...LOL! At this point...I don't care..I just want to know.  Anyways, thanks again for the responses and I'll let you all know when I get checked out. 

Take care and have a blessed day!!