Is it always better to know what''s wrong with you? Or ignorance bliss sometimes.

[Mara]

so sorry to hear about this Gypsy...i hope it is not that and you will get well soon.

really random note, but if you do have it, you are the third person here in the bayarea who i know who has been diagnosed with it in the last year, all people within their 30's.

from what i remember reading, isn't it quite rare??? time to move away...what are all these computers causing. ugh.

 

[E B]

More big hugs sent your way, Gypsy!

 

[snlee]

Date: 1/28/2009 7:59:31 PM
Author: EBree
More big hugs sent your way, Gypsy!

Ditto. Thinking of you Layla. Hang in there.

 

[mimzy]

gypsy i''m so sorry you''ve gotten this scary news. I''m really praying that they figure out what it is quickly and that you''ll have your answers soon. Not knowing is the scariest part. We''re all here pulling for you!

 

[Porridge]

Best wishes going out to Gypsy and MisterGypsy. I hope you get some good news.

 

[somethingshiny]

More prayers for you, Gypsy. I can''t imagine how hard this must be for you both. Please stay optimistic.

 

[Gypsy]

Hello Everyone! Thank you so much for your well wishes, your support, and your friendship. Lupis tests are still not back, but I'm home!

I have neurocardiogenic syncope ( http://www.hrtcare.com/neurosyn.asp ). I'm exhausted. That tilt table test can take a LOT out of you... especially since the first time the blood pressure monitor failed, and they had to make me pass out twice (was not difficult to do at all). LOL.

I have/had Menometrorrhagia. Excessive female bleeding (which I've known about but my previous OBGYN had misdiagnosed the cause and wasn't treating it correctly) I had a procedure to 'restart' my system. Let's hope it works!

I DO NOT have polycystic ovary syndrome (misdiagnosis by previous OBGYN). But there is something wrong with my ovaries. Will be following up on that.

Have an appointment with the rheumitologist on Monday morning, so hopefully I'll know more then about the Lupis issue.

I am very happy to be home. And I am very happy to have a diagnosis regarding the fainting episodes I've been having, as they were very frightening, and excalating each time (3 times in the last week, not including today's induced faints).

I'm exhausted, but I have a few days before I go back to work to recover, and will hopefully know more (NEGATIVE, NEGATIVE, NEGATIVE... this is one test I hope I FAIL) about the Lupis results by then.

((HUGE HUGS)), and MANY MANY THANKS.

 

[Linda W]

Layla sweetheart,

I am happy they finally found out what is wrong with you. I do hope that it can be treated. I have never heard of this condition before and I just read it.

I also hope that you do not have Lupus. I have been thinking of you all week.

I wish you could take the rest of the week off and just rest. You have been through so much.

Hugs to you honey and please rest tomorrow.

Love, Linda
xoxoxoxoxoxoxoxox

 

[Gypsy]

Thank you so much Linda for your love and concern, I''m sorry you''ve been so worried. I''d never heard of it either, you find new things out everyday. The doctor (cardilogist) sounded much more positive (outcome wise) than the website makes it sounds.

I''m out of work till Tuesday, so I do have the rest of this week off. I''m going to be resting till Tuesday. Promise.

Would you believe our Christmas tree is still up? I really haven''t been feeling well. I think the most strenous thing I''m going to be doing is wrapping up the ornaments and putting them away. It''s almost February. And it was a real tree... so it''s crisp, poor thing.

I''m gonna crash very soon, I''m just amazed at how tired I am. I don''t feel like I''m in my 30''s. LOL.

 

[Deelight]

Gypsy that is so good to hear your home, just try and chillax and take it easy .

 

[sevens one]

oh how scary for you.
Please let yourself rest and take care.

 

[dani13]

Hi Layla,

Sorry Im a little late to this thread......Sending lots of prayers and big hugs your way! I hope you feel better soon!!! xoxo

 

[Kaleigh]

Oh Layla,
I am soooooo glad you are home. I hope you get lots of rest. I am glad you have gotten some answers. And I hope the Lupis test comes back with a big fat NEGATIVE!!!! HUGS!!
xxoo Lisa

 

[Lorelei]

Date: 1/29/2009 10:54:48 AM
Author: Kaleigh
Oh Layla,
I am soooooo glad you are home. I hope you get lots of rest. I am glad you have gotten some answers. And I hope the Lupis test comes back with a big fat NEGATIVE!!!! HUGS!!
xxoo Lisa

Ditto! Rest up surrounded by kittahs and take good care of yourself!!

 

[Hudson_Hawk]

Layla, I''m so glad you''re home and the doctors were able to give you some answers...rest up!

 

[mia1181]

I hope you FAIL that test Gypsy! I mean seriously flunk! I''ve been thinking about you all week but haven''t had a chance to check in. Saw that John posted, he is such a sweet guy.

It is good that you are getting some answers and even clarifying some past mis-diagnosis'' (I have no idea how to pluralize that word!).

The neurocardiogenic syncope sounds a lot like what my friend was diagnosed with a few years ago. She has P.O.T.S. which also causes fainting spells. Her''s is triggered by standing up too quicky, I think. But it is very manageable, you just have to be aware of what might trigger it. You might have to change a few things you are doing. My friend had a really hard time asking for help when she knew she shouldn''t be doing something, but after a while she realized she had to start taking better care of herself. I just wanted to let you know that it is definitely do-able.

Anyway..... hoping for a big fat negatory on that Lupus test, please keep us posted!

 

[Definitely. Maybe]

I will be praying for negative results Gypsy. I always love reading your posts and you seem like a wonderful person. You also have a ton of support from many on this forum. Tons of prayers and negative test dust coming your way!

 

[WishfulThinking]

Gypsy, we are so glad to have you back with us! Great news so far, really. I am also diagnosed with neurocardiogenic syncope, although I am not sure if it comes in various stages of severity. Before I was diagnosed it was really difficult to manage, but now that I know the cause I''ve learned to stay away from things that triger fainting spells and it hasn''t been so bad. I hope you have the same experience.

I am thinking of you every day and praying with all of my might that your Lupis tests are NEGATIVE NEGATIVE NEGATIVE. I hope you flunk with flying colors.

Get lots of rest, sweetie. *hugs*

 

[snlee]

Date: 1/29/2009 10:56:01 AM
Author: Lorelei

Date: 1/29/2009 10:54:48 AM
Author: Kaleigh

Oh Layla,

I am soooooo glad you are home. I hope you get lots of rest. I am glad you have gotten some answers. And I hope the Lupis test comes back with a big fat NEGATIVE!!!! HUGS!!

xxoo Lisa

Ditto! Rest up surrounded by kittahs and take good care of yourself!!

Thritto!

 

[teapot]

Gypsy, I seriously hope you don't have Lupis but is is better to know what you have and treat it appropriately. My FIL kept ignoring the signs of illness until he couldn't function without feeling pain. Had he dealt with the signs earlier, he might be with us today. It sucks to know that you might have something, but knowing is always better, especially if it affects your quality of life.

ETA: I just finished reading the rest of the post. Thanks for posting John!

I'm glad that you are getting clarification on your other conditions.

 

[Gypsy]

Good... um, it''s afternoon isn''t it? LOL. I slept in.

I''ve got an appointment with my GP tomorrow, figured out disability from work today, and woke up with extremely swollen glands this morning that I hope go DOWN. Staying in bed pretty much all day today. Though my mom is concerned about me so I will probably go over there for a quick visit, if I''m up to it, tomorrow. She can''t leave the house yet, so I have to go over there.

I''m actually hoping that the Lupis results are in tomorrow (though my GP may not know how to interpret them, as they were ordered by the rheumatologist and were not standard panels).

It''s so good to be home. And clean... they wouldn''t let me shower in the hospital (kept worrying I''d pass out on them), I took two showers last night (quick ones), with a long bath in between them (prone is good).

I do agree that it is best to know what is wrong with you... especially in light of the fainting, and the diagnosis issues, and everything. So if I have Lupis (through I feverently hope I do not) I would like to know ASAP.

Wishful honey, another person with this problem! I used to think I was just a really lazy person, little did I know I was actually just unconciously listening to my body and trying to keep myself from passing out when I''d sit or lie down often!

I do need to learn to hydrate myself properly. It''s not something I''m good at, but that''s my immediate goal... learning to drink a lot of fluids.

Thank you so much my friends for your kind words of encouragment and care. I will be better about taking care of myself. This has been a pretty big scare.

 

[teapot]

Gypsy, to encourage you to drink more water, get a reusable bottle and make sure you keep it nearby. Nothing encourages you to drink more than to have water available. Make sure you get one that is easy to sanitize and contains no leaching agents (some plastics do leach.) Here''s another tip: make sure it fits in your cup holder in the car. That way you have a home for it in the car.

Here''s hoping for the best and some ****dust**** and (((((hugs))))) for you.

 

[violet02]

Ok I suck! I had no idea about this! I have to start reading more forums then just hangout and BWW!

I''m really sorry to hear you''ve been ailing but I''m happy to read that you''re home finally!

If you need ANYTHING at all drop me a line! GET WELL SOON! **HUGS**

 

[AmberGretchen]

Try some lemon, or mint, or orange/lime, or cucumber or something yummy in the water - sometimes that can really help, makes it feel like more of a tasty treat than just an obligation.

Herbal teas work well too - decaf ones are just like drinking water but with extra good stuff in them for you, and you can drink them hot or cold depending on your preference. I''m partial to peppermint, but there are tons of nice flavors out there.

 

[lyra]

My best friend has lupus. I''ve done the testing for it myself, and the results for me were inconclusive. I know what kinds of treatments and lifestyle changes my friend has had to make. Mostly it is medication (as you know from your family members) and avoiding stress, avoiding the sun, and really taking good care of yourself always. You are in my thoughts. I hope your tests are negative.

I''m glad you got the other things diagnosed properly. Now at least you''ll be put on plans to help you be healthier and feel better. Take care Gypsy! We need a big hug emoticon!

 

[Octavia]

Goodness, Gypsy, I just saw this thread and I'm so glad that you're back home and have started to unravel what is wrong with you. As scary and frustrating as it can be, it's still better to know. FWIW, I have a friend with lupus and long ago (before I knew her, and right after she was diagnosed), she was very, very sick. But for as long as I've known her, she's been in remission and is living a (relatively) normal life. I know that she has to be very careful about her health, and that she always worries about whether a flare-up is coming, and of course she wishes she didn't have to live with it. But people who don't know that she has the disease have no idea that she's ever been sick. I really, really, really hope that your tests come back negative and that you're on the road to recovery already, though.

 

[allycat0303]

Hi Gyspy,

I just saw this and had NO idea what you were going through. I am so sorry to hear about this mess on your hands. In response to the title of your thread though, I think in *THIS CASE* it`s better to know. Mostly because MisterGyspy, and I am sure your entire family, is very worried. Sometimes it can be a relief to know what is wrong with you. I know that this will probably be an ongoing thing. If the diagnosis is +, then comes the process of dealing with it. If it is -, then continues the process of trying to figure out what it is. Whatever it is, I`m thinking of you and sending you lots of strong, positive thoughts. Whatever it turns out to be, you can handle it.

 

[diamondseeker2006]

I just found it, too, Gypsy, and I am so sorry for all you have been through! Hopefully the neurocardio thing was the cause of your symptoms and that lupus has nothing to do with it! I am so glad you went and had the tests to find out so you can learn how to best treat whatever it is! {{{{{HUGS}}}}}

 

[Gypsy]

Wow, lookit all the responses. I've been trying to keep distracted on RT.

SO... here's an update:

My neurocardio-whatever is probably something I've had for a while. But it probably made itself so extremely obvious this last week because I've lost about 1/3 of my blood volume in the last two weeks (according to my doctor today) AND because I have an infection. Trifecta! SCORE! I'm not allowed back to work until 2/9 at the earliest.

All but ONE of my Lupis tests is back... and they ARE NEGATIVE!!!!

The only caveat is the one that isn't back is the one that my Mom is particularly high on/ positive for. But apparently it's a very specific test that is only run in a couple of labs, so it's going to take a while for the results to come in. BUT so far... I've flunked 6 tests... come one LUCKY NUMBER SEVEN!

I can't open bottles of water (my hands are so weak), sit up for more than 10 minutes without nausea, or walk without holding on to things (John, walls, furniture) much (more than 5 minutes). And the only time I'm not cranky, nauseated or fuzzy headed is when I'm lying with my legs well elevated above my head. Doing wonders for my back... LOL.

But apparently as my blood volume rises, I continue to hydrate, and my infection goes away I should return to normal.

I think the PS Dust is working folks. So far, nothing unmanageable diagnosed!!!

THANK YOU, THANK YOU, THANK YOU!

 

[Hudson_Hawk]

Gypsy-I''m so glad to hear you''re feeling a bit better. I''m also glad you got good news with your test results. My fingers are crossed for test number 7!!!