Scared about my AFP test - Mothering Forums

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#1 of 25 Old 03-25-2006, 12:44 AM - Thread Starter
 
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Ok, I'm freaking out. I'm 17 weeks pregnant. Last Friday, I took the stupid AFP test. Now, this hospital has never called me with ANY test results before (they say if there's nothing wrong, they don't call. I guess that's their policy. Whatever.) Well, I got home today at 6pm and had a phone message from them left at 4:30, telling me to call them on Monday, talk to Nurse So-and-so regarding my test results...

Ok, you know what? NEVER stress out a pregnant woman...we are vulnerable. We are hormonal timebombs ticking away, and the LAST thing you should do is to call one on a Friday right before the office closes and tell her "Hey, your baby might be screwed up, but you can't call us til Monday, so, hey, have a nice weekend!" (Ok, my words, not theirs.) Why not just hang up and call me on Monday???: : :

Please, has anyone had a "call back" on one of these tests? The doctor explained to me that the test doesn't come back positive or negative (then why the hell even do it?) But, basically, it tells you if your risk is higher than normal, and if it is, then they subject you to more stupid tests (some of which are risky to baby.) I'm considered "low risk", I'm in perfect health, I have had(so far) completely uncomplicated pregnancies (this being #2), but I did just turn 34 last week. So, do I have cause for alarm, or should I just relax and not panic, because it probably means nothing?
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#2 of 25 Old 03-25-2006, 12:54 AM
 
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would a "higher risk" possibility cause to consider terminating your pregnancy? if not, you have the option to decline any further testing which could be risky to your baby.

i'm sad that you are feeling stressed about this and i agree it was rude of them to leave a message at the end of the day on a friday... please be gentle with yourself and do something comforting for yourself this weekend.

~claudia
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#3 of 25 Old 03-25-2006, 01:01 AM
 
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Breath in and breath out!

I hate the triple screen. It is an incredibly unreliable test. I talked to my OB about it one time after having a scare with mine with DD (different OB at that time). He told me that if it is given during the 17th week (not the 16th or 18th week) but the 17th week, it can be pretty accurate but any deviance off that and it is 85% INACCURATE! : Mine was given at 18.6 weeks. It is very rare for it to give a false "negative" but extremely high in giving false "positives", I don't understand why they really use it since there are so many falses with it.

The most common false inaccuracy is the Downs which is what I came up "positive" for with DD. We did a level 2 u/s and an amnio which all came back totally normal. That's the one time in your life you *want* your baby to be totally "average" on every measurement. Lots of fear and stress for nothing and actually a greater risk of having a m/c from the amnio than having a true positive for Downs.

My DD was born without Downs.

Personally I say ignore it and relax and DON'T PANIC!! I know easier said than done but really try. Maybe they are calling because someone in the Lab dropped your sample.
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#4 of 25 Old 03-25-2006, 01:39 AM
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I had an early test (before 12 weeks). My OB called me and said that some numbers were slightly high which may mean that my baby had spina bifida and that I needed to have an ultrasound to make sure it was not the case. I was super stressed!
Well, when I came in for the u/s, another doctor told me that the numbers were totally fine by ‘old’ standards, but the standards got changed a bit few years earlier and my numbers became slightly high. I wish my OB has told me that ‘little’ fact! I was so stress waiting for the u/s !
Everything was fine, of course and my baby was born healthy and happy!
I’m sure everything is ok with your baby as well, don’t worry about a thing! This is just their job to stress moms out : !
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#5 of 25 Old 03-25-2006, 01:55 AM - Thread Starter
 
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Thanks, mamas! I just got off the phone with my aunt, 'cause my cousin just went through this same thing a couple months ago. She told me this test has like an 80% rate of false positives, and of the 20% of true positives, only some really small percentage (can't recall at this moment) of those babies actually have something wrong with them. So, will someone please tell me why they routinely administer this scary test if it is SO #@*! inaccurate? (My cousin underwent an amnio, and turns out everything was just fine!)

No, an abortion is out of the question (especially considering how many of these "terminated" babies actually turn out to be "normal"!) I coudn't live with that. So, what do I need to know before deciding whether or not to undergo more testing or (God forbid) an amnio? Or do I just give it all up to The Universe/God and have Faith? Sometimes I think these tests are more of a curse than a blessing!
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#6 of 25 Old 03-25-2006, 02:53 AM
 
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First, let's wait and see what the results are. Yes, it was very thoughtless to leave the message on a Friday afternoon. You may want to call the office manager and politely tell them the impact they had on you just so they can perhaps change their policy!

I hate this test, too. I declined it this time because of that. The older you are the more likely you are to get results that indicate increased risk of problems. The fact that you're 34 just makes your changes higher in their scoring method.

If terminating isn't an option, but you may consider doing prenatal surgery, like in the case of spina bifida, you can ask for an ultrasound, which I believe would be the next step anyway. You DO NOT have to get an amnio. You do not have to get anything. You don't even have to hear the results if you don't want to!

So breath deeply and try to keep busy this weekend. The changes that there's anything wrong with your baby are really, really small.

Kat - mama to Clara (9/29/03): & Iris (5/30/06)
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#7 of 25 Old 03-25-2006, 05:50 AM
 
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That stupid test. I had it with my first two and really sweated that week so I declined it this time. I honestly think for this test they would call the positives and negatives, so they may just be making a courtesy call to you to say that you are neg. I would chew them out on Monday though and tell them NEVER to leave a pregnant woman hanging over the weekend like that. I hope everything turns out just fine for you, mama.

mama to Joshua (9), Lily (8), Jude (6) and Ava (6)

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#8 of 25 Old 03-25-2006, 07:27 AM
 
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Could your pregnancy dates be wrong? W/my 2nd baby I was a month less pregnant han I thought, so the AFP results were way off & I got a call. There could be so many reasons for the call. Please try to stay positive. I agree, these tests are very stressful until you get the results, then hopefully you will feel reasured.

Happy mama of four Wild Things
"And now," cried Max "let the wild rumpus begin!"
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#9 of 25 Old 03-25-2006, 11:55 AM
 
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If you're not going to terminate, I would certainly not even bother with the amnio. Maybe get an u/s to see if there's spina bifida or something, but that's it.

I'm lucky in that my doctor lists the AFP as totally optional, and when I said I didn't want it, he said "no problem". He only mentioned the test kind of in passing, not as a routine test that everyone must get. I was happy to not even have to argue about it. I wouldn't terminate, so there's no point in me even taking the test.

And yes there is an incredibly high rate of false positives with that test. It's ridiculous.

Mama to Tornado Boy (6/04), The Brute (11/06), and Mischief (05/09)... expecting in February '15
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#10 of 25 Old 03-25-2006, 12:51 PM
 
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I opted out in both pregnancies because of the high false positive rate. The Quad Screen that they offer now is supposed to be more accurate, but I chose not to do it as well. I have enough anxiety already!

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#11 of 25 Old 03-25-2006, 03:06 PM
 
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I also had a scare with this test. When I was pregnant with my second daughter, the doctor called me and told me the level was low, which can indicate Down's Syndrome. We were scared and I wasn't going to terminate, but did have the amnio to know for sure. I wasn't really educated or made aware of the potential dangers, so I had the amnio. I wouldn't do it again. It was scary and I'd never terminate anyway. The amnio came out fine and she was totally healthy. False positives are so common with this test. I wouldn't stress about it too much. I didn't have this test with the next two pregnancies because I can't live with the stress.
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#12 of 25 Old 03-25-2006, 03:18 PM
 
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Just wanted to add a "me too"

Had an increased risk of Down's according to this test during my first pg. We did go ahead and have a Level II ultrasound but since none of the other markers were present we didn't have the amnio. He was/is perfectly fine.

I've opted out of the test since that first time too. I bet all is fine, and I'd try not to worry about it (easier said than done, I know!)

And back then, they called me at work and left the message with my boss!! I was freaking out. They all apparently need to learn a more gentle way of getting this information to us...sorry they were so thoughtless as to leave a message late Friday afternoon!

C ~ mama to (16), (13), (9) (5)

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#13 of 25 Old 03-25-2006, 03:50 PM
 
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Quote:
Originally Posted by blissmonkey
No, an abortion is out of the question (especially considering how many of these "terminated" babies actually turn out to be "normal"!) I coudn't live with that. So, what do I need to know before deciding whether or not to undergo more testing or (God forbid) an amnio? Or do I just give it all up to The Universe/God and have Faith? Sometimes I think these tests are more of a curse than a blessing!
I say leave it alone. You're not willing to consider an abortion (YEAY!), so why even put yourself through any more "what ifs" that will simply cause more unnecessary stress and likely lead to nothing terribly helpful? I definitely wouldn't. But I won't have the first test, either. My perspective is that we will deal with all potential problems our child could have WHEN h/she is born and actually has them. There are some that suggest that knowing while the baby is still growing gives time for parental preparation... but to me, that's sort of (in a HUGE way, really) saying that those with ill parents have more time to prepare themselves for the death. Death is death - whether of a parent or a dream for your child's future. I would much rather, personally, have a pleasant pregnancy, enjoy the daydreams about my child's lovely future, and encounter and deal with any problems when they ARE REALLY THERE.

In your own words:
give it all up to The Universe/God and have Faith
YES! And, I think you're right:
these tests are more of a curse than a blessing

IntactaLactavist, HomeBirthin' Baby Wearin' Co-sleepin' Homeschoolin', City girl gone Country Livin' SAH(HSing)M

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#14 of 25 Old 03-25-2006, 04:50 PM
 
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i'm glad you found a little bit of peace in dealing with an inconsiderate message left at the end of the day on a friday.

a couple of other things i thought of in addition to all the other things mamas shared: additional testing is certainly not required, but not having the tests may cause your care provider to put you into a "possible _______ problems with baby" so a different set of interventions while you are laboring and giving birth. IF (big IF) these intial AFP test results do end up showing you at higher risk, ask about all you options for how to proceed. something like, "so what tests could tell us more about this possible problem?" and then when your care provider finishes answering say "ok, and what other tests could tell us more?" and if they have more to say ask that same question again until they finally don't have anything more to say. and then you could ask, "and what if we chose to do no further testing?" and listen to their answer. you might approach the situation looking at the least invasive tests first and considering them and info they would provide and then considering the more invasive tests and the info they would provide. you could also consider buying yourself more time with your care provider and say something like "thank you for explaining all of these options to us. i'd really like to think about it some more before we make a choice about any further testing and hope that we can share that decision with you sometime next week." this also has the added benefit of giving the care provider the impression that you are truly taking their expertise and knowledge of your personal situation into consideration.

the other thing that i wanted to share was something i actually heard on the television show Judging Amy. a few years ago, one of the main characters was pregnant with their second baby after losing their first baby shortly after birth due to a birth defect. their risk of having another baby with this same defect was higher since they had had one already, and there was a lot of discord in her relationship with her husband because of it. he wanted to know as much as possible about the in-utero baby's health status, but (and this is what i found so thought-provoking) the mama wanted to enjoy thinking and feeling and believing that this new baby would be perfect and would have the long and happy life she imagined for it everyday. she believed that if indeed this baby did have a birth defect that needed to be addressed, she would be able to shift gears and do what needed to be done at that time, but she did not want to risk not feeling the joy of her pregnancy and her baby's arrival and newness by being weighed down with information about that baby's possible problems.

i do hope you let your care provider's office manager know that you were quite stressed throughout the weekend because of their 430pm on a friday message and though you appreciate them trying to reach you late at the end of the week, it would probably save some other mamas that same stress if they did not leave messages on a friday since their office is closed throughout the weekend.

please update us when you can and wishing you more peace...

~claudia
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#15 of 25 Old 03-25-2006, 05:17 PM
 
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Hugs mama, that is so hard.

I had a first trimester screening (which is supposed to be more accurate but whatever) give us a very elevated risk of problems. TBH, my husband and I weren't sure how we felt about termination, but considered it, especially if the baby had a very serious problem that would cause suffering or death. We also decided that if there was a problem that could be detected early it might change our birth plans (for example, would it be important to birth in a hospital vs. at home, or in a hospital with a NICU, or have a pediatric cardiologist available, etc). We discussed level 2 ultrasound, and decided that we needed to know for certain (ultrasound being accurate only about 60% in Down Syndrome cases, for example), and we decided to have the amnio. Turns out we were worried for no reason.

I personally would do it the same way again, because I would not have been able to relax and enjoy the rest of my pregnancy. I know myself, and I would have been plauged by anxiety. But that is ME. If you feel that having an ultrasound to look for markers, especially if you would not consider termination, is the best option for you, then do it! I think that more than likely, a level 2 ultrasound would ease any concerns you might have about your baby's health. You can still opt for an amnio after the ultrasound if you want to, but you probably won't want to.
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#16 of 25 Old 03-25-2006, 06:35 PM
 
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Quote:
Originally Posted by blissmonkey
So, what do I need to know before deciding whether or not to undergo more testing or (God forbid) an amnio? Or do I just give it all up to The Universe/God and have Faith? Sometimes I think these tests are more of a curse than a blessing!
Well it depends on what markers are the ones that are "positive" . The three things that the AFP test will generally show markers for are Downs, Spinal Bifida and Anencephaly. And both the Spinal Bifida and Anencephaly can usually be detected or ruled out on an u/s (*IF* you have a tech that is knowledgeable and/or is looking for those factors). Down's is a little bit more tricky but again a good u/s can usually detect/rule out... there are some common defects with Downs (skull deformation (wider through the sinus area), heart & kidney defects and a couple other measurements that could be off (th femur I *think*) that the tech can look for to help with diagnosis. But the only true way to rule out Down's is through an amnio since they are checking the actual chromosome 21.

The big question you have is... (since you stated termination isn't going to be an option for you) how prepared do you want to be? Like I said an u/s should tell about the Spinal Bifida which can often be corrected (while still in utero now) and the Anencephaly there isn't anything that can be done for the baby but be prepared for yourself.

I will no longer take the AFP test. My concern (the neural tube defects) can be ruled out with a u/s and minimized by an increase of folic acid to my diet before the pregnancy.
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#17 of 25 Old 03-25-2006, 10:56 PM
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My OB told me yesterday that only 50% of Downs show marks on 18-20 weeks u/s, another half appear totally normal . So 18-20 weeks u/s is only 50% accurate
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#18 of 25 Old 03-26-2006, 06:39 PM
 
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blissmonkey I am so sorry you are going through this. I couldn't imagine being left hanging-what bumschmucks .

I am 42yo and haven't been to a mainstream caregiver yet, but have spoken w/ the head CNM who heads up the midwifery practice there. I mentioned to her that I will not be doing any of the testing because we won't be terminating and she completely agreed w/ my choice. However, I am sure to get another MW in the practice when the head one isn't there and am prepared to repectfully decline the tests that will be offered because I am AMA (whatever ).

I really appreciated all the other mamas perspectives on testing and the experiences everyone shared. I've done a lot of research on statistics and such, but it helps to hear real LIFE women's experiences with the 'testing' issue.
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#19 of 25 Old 03-26-2006, 11:13 PM
 
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A friend of mine had this test done and they did the same thing to her. Over the phone they said her baby tested positive for Downs Syndrome. She had to wait a week for her next appointment before they would give her details. At her appointment, after a week of staying up nights and being in constant worry, the OB said, "Oh, by the way, the test has a high rate of false positives...there's actually only a 4% chance that your baby has Downs."

(((sigh)))

I'm sorry you're going through this, but odds are in your favor. Keep breathing...you can get through this. BIG (((((hugs)))))!

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#20 of 25 Old 03-26-2006, 11:16 PM
 
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The same thing happened to me that I had a call back after the test. It wasn't the weekend thankfully, but it turned out that they were calling about Group B Strep. I was so freaked out until I talked to her because I was sure it was the AFP test. I'm sorry you had to wait the weekend and I hope everything is ok.
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#21 of 25 Old 03-27-2006, 03:22 PM
 
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Quote:
Originally Posted by Yulia_R
My OB told me yesterday that only 50% of Downs show marks on 18-20 weeks u/s, another half appear totally normal . So 18-20 weeks u/s is only 50% accurate
This is true. That's why most do 2 level 2 ultrasounds, one early and one later. The doctor we were referred to does them 7 weeks apart. I just had my second one today because I am "advanced maternal age" and refused all other testing. They do the measurements, look for the markers and do a fetal echocardiogram on the heart. The doctor told me if these all come out good, the baby is fine. For us, it came out great. The baby has no markers at all, not even the so called "soft markers". Also, it depends on who does the ultrasound. Ours was done by a maternal/fetal medicine specialist so the results are probably more accurate than a regular ultrasound technician or an OB, since he specializes in this type of thing.
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#22 of 25 Old 03-27-2006, 03:30 PM
 
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Its appalling how many women have been scared by these tests.

I chose to deny all testing for this reason. They don't improve outcomes and they put everyone through stress and worry.

To the OP, please relax. I've met more people with false positives than negatives I think. Its insane.

XOXO
Beth

mama to Milena Anjali (4/26/06) and Vincent Asher (4/13/09) ~ married to the love of my life since 2002.
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#23 of 25 Old 03-27-2006, 11:32 PM - Thread Starter
 
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THANK YOU SOOOOOOOO MUCH!!!!! To all the mamas who took the time to share their stories and help ease my burden!
Well, I finally spoke to the doctor today, and get this...
she said at my age (ok, I was 33 the day I took the test, turned 34 the next day, so what age might that be? ) the risk of a Downs baby is 1 in 300. My score came out (she couldn't remember exactly) i in 297 or 296! Sheesh, all that fuss for what???

I told her I wasn't interseted in an amnio (for all the obvious reasons, not the least of which is the very horrifying thought of it!) and I just couldn't justify the risks involved, but I was already scheduled for a second ultrasound in 2 weeks. If they find any red flags at my u/s, then and only then would I even consider thinking about maybe entertaining the idea of amnio.

I think the bottom line is these ob/gyns are just trying to cover their you-know-whats and they don't want to take any risks, however slight. Truth is, pregnancy/parenthood-- let's face it, life in general-- is a crap shoot any way you slice it. (What Mrs. Gump would refer to as a box of chocolates!)

If I get pregnant again, even though I'd be older, and fall into that dark scary heading of "35 and over', I still would not take that test again. (Imagine if you peed on a pregnancy test stick and it told you "Your chances of being pregnant are 1 in X, and there's an X% chance of a false positive"! How many of us would take it?????)

Thanks again!
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#24 of 25 Old 03-28-2006, 12:19 AM
 
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You're exactly right blissmonkey..they are trying to cover their behinds. I'm so glad that you had better news from the doctor.
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#25 of 25 Old 03-28-2006, 12:38 AM
 
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oh yay! so glad it was good news!

~claudia
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