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Old 07-20-2012, 11:28 AM   #1
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New Poster, 1:640 ANA with centromere pattern

Hi, I'm Karen and like most people here I am scared to pieces.

Some background:

For 8 years I've had episodes of all over itching. Face predominent, it is almost as if my skin is hypersensitive. A single hair brushing across my face will make it itch like mad.

I also have several issues I deal with such as:
morphea
lichen sclerosis (vulvar and anal)
raynauds
and IBS

Recently I have had a lot of bone/muscle pain (ache) in my legs that would awaken me. It started being more a bone/joint/muscle ache last week when I went to my doctor. I also am fighting fatigue. We've been moving for the past month, while working full time and I'm 53...that'd wear anyone out.

So...to get to the story, I go to my doctor...he does blood work that shows an ANA 1:640 with centromere pattern and low VitD. Yesterday we did liver panels and a scan of my heart, lungs, kidneys, pancreas, gall bladder. I await those findings.

Thursday I go for an EGD as my abdomen is super sore to the touch where the ribcage meets (stomach area).

I'm scared to death of systemic sclero. My doctor had informed me that those with morphea tend to not get systemic sclero. TEND. I have hoped against hope that this is true.

Could an ANA of 1:640 show when one has morphea? Lichen Sclerosis?

A lot on my mind here and right now, none of it too pleasant!

 
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Old 07-20-2012, 12:39 PM   #2
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Re: New Poster, 1:640 ANA with centromere pattern

It is indeed true that people with morphea generally do not get systemic. But should you end up being diagnosed, I'm betting that you will get the limited systemic sclero diagnosis, that is if you have a raised SED rate, and all that. In answer to your question, an ANA of 1:640 is starting to be indicative of AI disease. That being said, any number of things can raise the ANA titre including morphea. Should you end up being diagnosed with systemic sclero, most likely the limited systemic form formerly known as CREST, if you have the symptoms and inflammation to go along with. First, don't go on the computer and plop it into your search engine. You'll be scared half to death with the worst case scenarios, half truths and out and out mis-information that will pop up. Take a deep breath and just don't go there. I have been diagnosed with CREST for several years now. I will be 52 this year, so we're almost the same age! I still work full time, too. I know all about the fatigue, lol but I got that the worst when my kids were teenagers. Should you, and it certainly is not a "for sure" thing, be diagnosed with systemic, know that it is not a death sentence. There are many treatments available now and it is good to be diagnosed early, I think. But I am guessing you know all these things if you have morphea. I think that there is at least another lady here on the boards who has progressive, rather than limited, but I may be mistaken about that, who is very, very nice. I just wanted to let you know that you are not alone! Oh yeah, I know all about that itch. At one point you could write your name on my arm by using your finger to raise the welts. Still get it from time to time, but not so bad as that any more. Wishing you the best and hoping the diagnosis remains morphea, like that is a good thing, lol.

 
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Old 07-20-2012, 06:26 PM   #3
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Re: New Poster, 1:640 ANA with centromere pattern

Luca,

Thank you. Years ago, when I was diagnosed with Morphea, I found a great and busy sclero support board. I've since divorced and had a hard drive replaced so I no longer have that site. If you should come across one, I'd truly appreciate having it.

I hear you on the morphea. I told Jim (fiance)...who would have ever thought I'd think that way about my morphea...but I now do.

With a centromere pattern I think that tends to CREST or whatever it is now called. I'm trying not to borrow trouble but my legs hurt like the very devil, around my lips burn, I itch. My forearms ache. I'm so tired I feel like I did the week after my full hysterectomy! I had teenagers too though, and remember that running and being tired all the time

Jim and I are trying to do some ballroom dancing, nice gentle exercise and funny as heck when you look him in the face while doing it. lol I'm trying too to get back into pilates.

One question. Do you notice you are freezing cold more than you used to be? I used to love the fan right on me, now...no thanks. I chill.

I'm totally confuddled over which is the less destructive form of sclero, and by that I mean overall.

When it burns around my mouth, I get VERY scared. VERY VERY VERY. I told Jim tonight, I'll never complain about my lip lines or wrinkled hands again. I kind of like them, in fact.

Your post gave me a bright spot in the valley I seem to be keeping myself in. I thank you with all my heart.

OH>>>>

got the ultrasound results back on my lungs, liver, pancraeas heart and kidneys. No damage seen except for fatty liver which I will be working on with diet and exercise.

Liver enzymes good. So there is one happy thing. Thursday is scoping (egd) and esophogeal exploration...yay, erm, yeah...right

 
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Old 07-21-2012, 07:24 AM   #4
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Re: New Poster, 1:640 ANA with centromere pattern

Ya, I always have a sweater with me, no matter the temp. I have Raynaud's too which is triggered by temp changes more than anything else, because it's mostly controlled by drugs. CREST, or limited systemic sclero is the more benign, if you can call it that, of the two systemic forms. I don't have skin tightening on my hands, feet, or face yet which is where you would see it with CREST, if you get the tightening. I have been treated early and fairly aggressively and have responded pretty well to it, over all. Keep in mind that this is a very individual disease and each person has it differently. I have had more trouble with the Raynaud's causing migraines and secondary sicca than anything else. I have had the esophageal scope and that really wasn't a big deal at all. Like you, I don't have heart or lung problems either, knock wood. Like I said, I know about the itch. Still get it from time to time. I found that a nice oatmeal bath, not too hot or cold really helped. An OTC hydrocortisone cream can sometimes help with just a spot. You'll have to try different soaps to find what works for you, but I would advise concentrating the use of it to just those areas that really need it rather than scrubbing your arms and legs all the time. I use stuff that washes off cleanly and some people say don't use perfumed stuff but honestly I have never found that to be a problem. I also use a light body oil to moisturize and that helps with the itchies, too. I managed the aches for the most part with OTC stuff, with an occasional Rx for stronger ibuprofin. I am prone to tendonitis, too. And be carefull of sun exposure. Really can bring on the itchies bad. I haven't quit doing any of the things I like to, although I might be a bit slower now but I don't know but what that might not just be chalked up to me being fat and older, lol. I'll pm you the sclero sight that I am a member of that is quite active, but I gotta say that I do get irritated with the whining. LOL, I would much rather go do something than spend my time worrying about what may or may not come. If stuff happens, then I deal with it and move on. If it doesn't, then I haven't wasted time not being happy. I love the fact that you are ballroom dancing! A good attitude helps more than anything, I think, but that is true of life in general. It has always amazed me what I can do, even if I am not supposed to be able to. If ya don't know ya can't, you at least have the fun of trying and sometimes, you even succeed. I hope you have a wonderful weekend and I'll pm you that website. Take care!
Gretchen

 
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Old 07-21-2012, 07:12 PM   #5
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Re: New Poster, 1:640 ANA with centromere pattern

Hi Karen,

I came across your post because of the anti-centromere pattern in the title heading. I don't really have much else to offer besides what luca689 said - especially about making sure to live life and not worry (I'm paraphrasing a lot here because I can't say it as nice as she did!!). It's advice I'm trying to take myself, as I've got something potentially bad, but it's still not really clear what. Anyway, I'll be poking around in these boards for awhile - so I'm sure I'll see you around! I wish you the best with what you're going through

- marie

 
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Old 07-23-2012, 05:45 AM   #6
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Re: New Poster, 1:640 ANA with centromere pattern

Gretchen...

Thank you. For everything. The weekend went well except to get to the lake from the lake house you have to take 85 steps down and 85 steps up. My legs tended to want to quit working halfway up, especially that second day. I just stopped...stretched em out and went back at it.

I walked chest deep in the water a lot. I don't know why it is like I feel I can stave off the onset of all this if I exercise those muscles hurting the most (near hips and calf muscles as well as along the front of my shins and my forearms.

What bugged me most was I scared the stuffing out of myself because around my mouth was burning ... and kind of sore. I kept making Jim look at my mouth to make sure my lip lines were all in place. For years I've complained about those lip lines, but I LOVE every one of them now and want them to stay. My hands were hot and itchy too, so yep, I did a number on myself.

I've found I'm becoming more quiet as I try to assimilate to the pain. No one that knows me likes this. I'm generally a jabberer who laughs a great deal. Of late, that is not who I am.

I cry at night. Only Jim has to see it, but it hurts him, so I am trying to stop.

I do not have a definate diagnosis yet. We both know that something is very wrong though. My doctor says something is wrong too...now I wait for the rheumy clinic at the hospital with the sclero clinic to call to tell me they've accepted me. I hope to hear soon. If not, I have an appt with a rheumatologist on the 10th that is more local. Scoping on Wednesday, and I've had these before (I have had gut issues for 25 years and now wonder if whatever "THIS" is was'nt a contributor). I do feel like I've an ulcer (had those before too).

I am not feeling like I have trouble swallowing. OHHH, to be sure if I sit and think the process through I think, "Karen, it is a job to swallow" but the reality of it is that in the course of a normal day, swallowing throughout and eating, I have no issues. No heartburn. I hicburp (a phrase I coined...half hiccup half burp, something I've done forever, I rarely have had a real case of the hiccups) more than I used to, but eh...who knows.

I love your attitude. I did get lots of sun this weekend, and so far the itchies have not attacked in full force. We slathered me with lotion each night and continue to do so, I think that helps.

I think I am more scared when I hurt, and I hurt a lot now. Question for you. Do you feel your best upon waking each morning. I have 10 minutes or so each morning, just upon waking with NO PAIN. I revel in that 10 minutes.

I'm still pretty messed up with fear and dread. I'm working on it all though.

Please do send that pm...I get strength from others, hopefully I'll happen upon a few more like you who uplift instead of scare me to bits.

Last edited by hb-mod; 07-23-2012 at 05:58 AM.

 
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Old 07-23-2012, 05:51 AM   #7
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Re: New Poster, 1:640 ANA with centromere pattern

Marie,

Looks like we're in different boats on the same sea. What is it that is causing you pain and fear?

I'm trying to hard to do just what was suggested but truth be told...I'm just lost and scared right now.

I am ok, but this pain scares me. I can deal with the fatigue, but the fear and the pain...I'm struggling a bit with.

We'll stick by each other and help each other through this best we can.

Let me know if there is anything I can do to help you...I may live far, but I will certainly keep you in my prayers.

Karen

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Old 07-23-2012, 12:55 PM   #8
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Re: New Poster, 1:640 ANA with centromere pattern

I dunno about the morning thing as I hate to get up in the AM and leave as little time to get ready as possible, LOL! I certainly am no stranger to taking OTC anti-inflammatories. Got through a lot by using them as directed, although, perversely, they sometimes added to the itch. Oh well, it had to have been kind of funny watching me fidget, I'm sure. I tried to pm you but you do not have that feature enabled, BTW. I understand about the fear and sense of being lost, but I didn't care much for being either afraid or feeling that I had lost things in my life with my diagnosis, lol. I know what you and Marie are feeling and you can get through it and beyond. Wishing everyone the best of the rest of the day!

 
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Old 07-23-2012, 02:21 PM   #9
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Re: New Poster, 1:640 ANA with centromere pattern

The coordinator at the Sclero Clinic at Northwestern Hospital just called and was so very nice. She even said why not see a specialist if they wanted me to see a rheumy.

The doctor will evaluate the info sent by my regular doc tomorrow, and then call me with his thoughts. I'm excited and nervous.

EGD on Wednesday. I'm very anxious about that one. Not the test I've had them before, but what he sees in there. Yeah...anxious doesn't quite touch the hem of the garment there, but yes...anxious.

Just found out I have fatty liver, so I have to lose 20 pounds slowly, and I don't know that i'll be taking any otc pain meds til I get the green light on that one. In the meantime, my heat pad is my very best friend.

 
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Old 07-25-2012, 10:43 AM   #10
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Re: New Poster, 1:640 ANA with centromere pattern

just wanted to say "hello" and I hope your test went well today!

 
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Old 07-30-2012, 03:32 PM   #11
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Re: New Poster, 1:640 ANA with centromere pattern

Interesting visit.

The Sclero clinic was very nice.

The specialist told me from my tests and the way I look she does not feel I have scleroderma. She looked at my information, my past medical crap, morphea scars, and did some oil test thing on my cuticles, also some other pinch thing to my hands...tested my strength, listened to my lungs, heart.

She said, I'm pretty sure you do not have scleroderma Karen, I think you have some sort of issue with bone loss that you need to see an endrocrinologist bone specialist.

The only bloodtest she ran was some muscle tests, no ANA to recheck the level or anything????

So, I now go see the endocrinologist bone specialist...IN OCTOBER! Good lord.

I don't know what to think about all this Gretchen!

 
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Old 07-31-2012, 10:00 AM   #12
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Re: New Poster, 1:640 ANA with centromere pattern

ANA level is of no real value in CREST, as it does not reflect disease activity as it does in lupus. It is so good that a sclero specialist does not feel that you have systemic sclero! Especially if she examined your nailfold (the oil test thingy, that is a very important test for CREST or the development thereof)! Did she have any reason for your symptoms? Other than sending you to endocrinologist, (which is great) did she have any other recommendations? Maybe the answer Does lay with that specialty, rather than rheumatology. I am so glad that morphea is enough sclero for you! And to revisit the lab thing - your specialist obviously had faith in the lab that was used. If it is a good lab, why spend money repeating a test when it will tell you the same thing. Remember, you are a patient, not a lab test and your number may just be high - ish. I think I forgot to ask before, do you have little red dots, or telangiectasias? Umm, oh, the muscle test is to make sure that tissue isn't being destroyed like in polymyositis or something. I think that this is great and now you have a direction in which to go. I am sorry that you still hurt and have to wait 'til October to another specialist. Any kind of specialist takes forever to get in to see nowadays! But I'm sure a lot of clouds have lifted from your immediate horizon. So take a deep breath, and kiss your Jim. Waiting sucks and kissing doesn't, oh wait, it does, LOL, i crack me up. Seriously, try not to worry too much until October and keep in touch. And did your rheumy answer all your questions? Have a great rest of the day! (BTW, I already have osteoporosis and have had for several years - take your vit D3 and calcium!)

 
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Old 07-31-2012, 01:06 PM   #13
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Re: New Poster, 1:640 ANA with centromere pattern

Quote:
Originally Posted by luca689 View Post
ANA level is of no real value in CREST, as it does not reflect disease activity as it does in lupus. It is so good that a sclero specialist does not feel that you have systemic sclero! Especially if she examined your nailfold (the oil test thingy, that is a very important test for CREST or the development thereof)! Did she have any reason for your symptoms? Other than sending you to endocrinologist, (which is great) did she have any other recommendations? Maybe the answer Does lay with that specialty, rather than rheumatology. I am so glad that morphea is enough sclero for you! And to revisit the lab thing - your specialist obviously had faith in the lab that was used. If it is a good lab, why spend money repeating a test when it will tell you the same thing. Remember, you are a patient, not a lab test and your number may just be high - ish. I think I forgot to ask before, do you have little red dots, or telangiectasias? Umm, oh, the muscle test is to make sure that tissue isn't being destroyed like in polymyositis or something. I think that this is great and now you have a direction in which to go. I am sorry that you still hurt and have to wait 'til October to another specialist. Any kind of specialist takes forever to get in to see nowadays! But I'm sure a lot of clouds have lifted from your immediate horizon. So take a deep breath, and kiss your Jim. Waiting sucks and kissing doesn't, oh wait, it does, LOL, i crack me up. Seriously, try not to worry too much until October and keep in touch. And did your rheumy answer all your questions? Have a great rest of the day! (BTW, I already have osteoporosis and have had for several years - take your vit D3 and calcium!)
What does that mean that the "ANA is of no real value in CREST, as it does not reflect disease activity as it does in lupus." The centromere pattern can suggest LUPUS? I'm exhausted today so likely reading that wrong. She didn't mention LUPUS, regardless, if she thought that I hope she would have mentioned it!

She feels I may have some thyroid issues (run in my family ...sister 1 Graves, Sister 2 Hashimotos, 2 cousins with Hashimotos as well). She thinks the gland is telling my bones to not do the calcium thing right.

I am told due to my hypercalcemia that calcium should be stopped, so I did. I take 5,000 units of Vit D per day now. The specialist said my levels are so low it may take 2 years of doing that to get the reserves built back up.

She wonders if the lack of VitD isn't what is causing all the bone/muscle pain. So...why the lack of VitD? We need to figure that out. I keep testing oddly. Hypercalcemic one visit...normal the next. She said it is low/high on the calcium levels and thinks they will send me for a full day urine test to determine how much calcium is in the urine.

She said my scans are bad enough we have to find out what is happening. Agreed!

I asked her if the morphea AND lichen sclerosis I have could skew the ANA to show the centromere pattern. She actually said to me that the pattern is read by a lab tech who may have actually had to come up with something and came up with that? I kid you not, that is what she said! She did confirm that even my fatty liver could elevate the ANA, she seemed unconcerned about the pattern.


I do have telangiectasias. Very few of them. Maybe 20-25 and they are not in one general area they are all over. She didn't even look for those! I believe you can get these with liver issues as well. She said my heart and lungs were good, my scans were good, my hand and skin was good. She asked me if my upper lip had always been that thin, I replied yes, got scared, went home and looked at old pictures to confirm, and the answer remains yes.

I have appointments with the gastro in the next few weeks and I'm going to ask him to examine this liver thing a bit more. Maybe a biosy to be safe.

She feels it is not cancer. Said since it is all over and radiates as well as moves around, that isn't indicitive of bone cancer.

If kissing sucks, you aren't kissing the right person, my friend Plenty of hugging, smiling and kissing went on yesterday.

No, the rheumy did not answer all my questions. While I appreciate that she is a professional in this field, while I appreciate she is the co-lead for that department, I felt rather brushed off. She said, "Karen, you are the healthiest patient I will see today...now get to that endrocrinologist asap."

ASAP...what a joke.

I would like to have had a bit more thorough exam...I sat with my clothes on and she didn't even look at the lichen??? Jim is thrilled (being a man and non-control freak). I am left a little lost.

I still hurt. All over. VitD is helping as the pain has lessened.

What do you make of all of this?

 
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Old 07-31-2012, 02:16 PM   #14
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Re: New Poster, 1:640 ANA with centromere pattern

What I meant is that the titre of the ANA does not correspond with disease activity in CREST - unlike in lupus where the higher the ANA the more active the disease (a generality). In CREST, a high titre does not mean that the disease is more active than low titre. I have Hashi's and she is absolutely right about the bone thing. Believe me, she DID look for the telangiectasias. I have them all over my face, hands, neck and chest. The ones on my chest are so prominent and close together that it looks like a permanent red rash. Typically someone with CREST has that and if you have them on your gums or tongue, or in your mouth, that can be a sign of more rapid skin thickening. I even have some on my lips. She also was looking for capillary dropout, loops or other abnormalities when she did that oil thing on your fingers and apparently didn't find any.. Fatty liver can be coped with by exercise and diet. Are you sure a biopsy would be a good thing? The risks may far outweigh the benefits. Vitamin D deficiency can cause bone pain, muscle pain, cramps and bone loss, if extreme. They used to call it Rickets. Rheumies don't treat lichen sclerosis, though. And the ANA pattern means nothing without symptoms. I believe about the lab tech getting it wrong, by the way. So, I think that you should have confidence in the sclero specialist and see the endo. (I don't usually get very specific about my own symptoms because everyone has a few red dots or what have you and might think the worst and worry needlessly.) I also have sicca and skin discoloration. My Dr stopped counting my red spots after a while because I have so many. Again, I think you should relax and see the endo. BTW, kissing was always called sucking face by my children, hence my amusement at my own lame joke.

 
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Old 07-31-2012, 02:19 PM   #15
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Re: New Poster, 1:640 ANA with centromere pattern

An ANA of 1:640 could fit with your symptoms and a centromere pattern can be associated with CREST syndrome, a variant of scleroderma. Let me stress though that people with CREST don't get as sick as people with regular scleroderma, and there is an association with CREST, not a direct connection. So having a centromere pattern does not guarantee you will develop CREST, only that you may be more likely.

 
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