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Old 07-16-2006, 01:18 PM   #1
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Question 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hi all;

Going through hell trying to get a diagnosis, as I am sure most of you have as well!

Quick synopsis of what I have been going through:

Muscle wasting of left leg & left foot is cold all the time & has barely detectable pulse. Seemingly pinched nerves in my neck for the last 14 yrs. Can put my neck & back out just turning over in bed or sneezing.

Carpal Tunnel ?? Nerve conduction tests in arm & neck scheduled for tomorrow.

Hypothyroidism & Fibromyalgia - just recently diagnosed.

Persistant migraines, brain fog, react badly to fluorescent lighting, chemicals & preservatives

IBS??

Pretty sure that's it. The concern now is that I have now had 2/3 weak positive ANA WITH speckled pattern, and now had TWO out of TWO high Anti-DNA tests with the weak ANA. They are going to 'keep an eye' on my bloodwork for awhile & see what comes of it. My rheumy is pretty concerned, yet very baffled by this. So I guess I am a puzzle??

He says I do NOT have lupus, OR MS. Ok then, so WHAT do I have ?? I feel like I am dying most days - physically I am drained & some days it is an effort to do simple tasks like wash my hair, or blowdry it etc...

Anyone else expecience these same kinds of lab results? I really feel lost here, like there is something more I should know, or something more the Dr's should know!

Any input appreciated!

Dee
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Old 07-16-2006, 04:18 PM   #2
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Deana, I know the feeling! It is very difficult sometimes to get the conclusive diagnosis....not that we want it.....we just want to know what is wrong. My rhuemy says I have CTD (connective tissue disease) he says I am almost at lupus but have not crossed the line yet and anything on my side of the line is called CTD.

I had a slightly positive ANA in Mar03 and in June 03 it went to highly positive ANA. I also have antiphopholipid antibodies and my speckled pattern ANA results show a DNA with high titers for lupus. Two years later I had a negative ANA and all blood tests were fine. I am low in Vitamin D which research is beginning to study about CTD patients and low VitD.

I also am hypothyroid and have fibromyalgia. One doc I visited said my positive ANA could have been from the hypothyroid. It is all a guessing game if you ask me. I just try to discuss all that I need with my rhuemy to be sure I stay out of pain and can keep going. It is all a wait and see game if you ask me. Good Luck let us know how you are doing.

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Old 07-16-2006, 07:17 PM   #3
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hi, Dee Have you seen the "sticky post" at the top of the Board on test results? It has a resource you should check. Go into it, then into Rheumatology, then into "Lab Tests in Lupus"; then read the sections on ANA/FANA and on anti-ds-DNA.

What's weird is that the article specifies an ANA level that's usually "met" in lupus patients. BUT there's ALSO, in the very next section, a VERY storng statement about high anti-ds-DNA levels being definitive for lupus. (I assume you are citing your levels of anti-ds-DNA, not anti-ss-DNA.)

It sounds like your dr. is hung up on your "uncooperative" ANA level. Or else he's dutifully counting how many of the "4 of 11" classification criteria you've met and is falling short of "4".

Dr. Daniel Wallace, in his hardcover, writes that ANA can decrease in lupus patients but that its falling doesn't mean much, and isn't even predictive of "improvement". Most libraries & bookstores have this hardcover, and his chapter on bloodwork could also be useful to you.

I'd be hopping mad in your shoes, to be honest. But it goes without saying that I'm no doctor. Is this the ONLY rheumatologist you've seen? Any chance you could try another?

I'm sorry you feel so lousy. Everything you wrote is familiar to me, too, except the hypothyroid problem. I took myself to a teaching hospital rheumie when I lost belief in my suburban drs., after years of problems, including rashes for the final 8 years. I rounded up all the bloodwork and skin biopsy results I could get and faxed them to my new rheumie in advance of my 1st appt. He was aghast to find years of clear findings---yet no one locally would make the call.

Sometimes you have to change drs. to get more nuanced thinking. Sounds like this dr. is "stuck", so maybe YOU have to be the one to force change? Wishing you clearer answers and help soon! Sincerely, Vee

 
Old 07-17-2006, 07:59 AM   #4
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hello Deana,

It's nice to meet you and welcome to the boards. I have not been on again in several weeks and this morning I just felt I had to log in. Now I know why.

You are an exact replica of me for many years. I have been hypoT for many years and had many unexplained pains. Former Dr. simply told me it was mid life and get used to it. I was in mid 40s at the time, on minimum dose of synthroid.

It turned out I was being under medicated for thyroid. Two years ago I was able to switch Dr.s and more tests were ordered. I have been since diagnosed with Hashimoto's thyroiditis, weak ANA gave Dr.s reason to look into Lupus. Final result, scarring discoid lupus with mixed connective tissue disease, hashi's, fibro. I would have joints that would swell and stay swollen for no reason. I would have pain from head to toe. The fatigue and pain would be so extreme it would take me more than half an hour to get up in the morning and bring me to tears. The pain in my back was so extreme I could barely move many days. I quit working because I couldn't concentrate on anything. I could only think of all the pain.

My current Dr.s all confer at least once a year. They compare notes. My GP does a lot of research on my behalf and sends things on to the busier Dr.s She keeps her practice small because of keeping family time so she does more individually for all her patients. All three of my Dr.s feel the Lupus flared and got so bad because of the thyroid not being treated adequately.

I think the key to anyone with thyroid problems is having that treated correctly. Many of my problems went away when that was done. It has taken two years of physical therapy. The Dr.s had me doing a slow but sure rountine so as not to tear any more conncetive tissue.

I have tears in the tendons, ligaments, and connective tissue of my shoulders, back, hips, knees, kidneys, lungs, liver, ankles, feet, you get the idea. However, again, and I can not say it loudly enough or strong enough, if you have thyroid problems, be certain they are taken care of first as this can cause you many unexplained problems. The body struggles to keep up and will cause any other problem you have to be worsened. Lupus is bad enough without thyroid deficiency exacerbating it.

I still have symptoms. Right now, for instance, it is hot summer and just 15 or 20 minutes outside will cause me to want to sleep. I could also take out stock in sun block for just those few minutes. However, now that I know the causes of some symptoms, I can avoid many of them or at least minimalize them by taking precautions.

I tell you this to give you hope that if you find the right Dr.s and get the thyroid treated correctly, much of your pain will ease up some. There is no cure for much of what we bear with autoimmune diseases but there is relief if the right treatment is prescribed. I am living proof. For all the problems I still have, I feel better now than I have for the past 25 to 30 years. It has taken two full years to get here, but here I am.

I will not tell you how aggressively your thyroid should be treated or what is considered good levels of TSH to keep a female at because I am not a Dr.,
[removed]

I hope you get the proper help and feel better soon.
May God Bless Us All
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Last edited by HBMod07; 07-21-2006 at 07:51 PM. Reason: Please do not direct members to do research outside of the board.

 
Old 07-17-2006, 08:36 PM   #5
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hello all who replied!

Wow, I had no idea what response my post would generate. I am grateful for this. Where I was feeling very confused, I at least have SOME clue what to do next!

My rheumy is the ONLY one in Southwestern Ontario who could take me. We have one here in a nearby city who USED to have a 2 year waiting list to get in. Now he does not take new patients at all! I went all the way to London from Amherstburg. That was quite a trip, considering I don't drive due to ocular migraines. I have constant visual disturbances & they get worse prior to a whopping 3-4 day migraine.

Forgot to mention, I also have this strange symptom - my Dr calls it Lhermitte's Sign. I think out of any of my symptoms, I find this one the most disturbing. I will get what I describe as a ZAP that jolts up the back of my neck & across the top of my head, sometimes goes up the back of my neck & runs up behind my right ear. It's like being electrocuted, no warning at all. It's usually apparent to anyone I am with, that something has just happened. They can see me jolt from it. It is worse if I have to stand in a long lineup. Curious symptom, but I have heard that it can be associated with MS. Been told I do not have that either. Anyone else familiar with this one?

I am being treated with thyroid medication, which I am responding favourably to. Not that I FEEL much better, just that my numbers are very good now - all in the normal ranges now.

I am also on Amitriptiline, that I take at night. I am told I likely have sleep disorder, as most with Fibro do. I have a sleep study scheduled for August 4th, so it might shed more light on that. Have always been an extremely light sleeper. Never wake up refreshed.

My 'weak' ANA has the dr's CONVINCED I do not have Lupus. He says I do not present the clinical features of Lupus. It is the Anti-DS-DNA test that he said was high. Actually my test results are:

Nov. '05 are ANA+ at 1:80 & speckled pattern - No anti-DS-DNA was done then

Feb. '06 ANA neg & anti-DS-DNA 311 (highly positive)

Repeated by rheumy May '06 ANA 'weak' positive (no numbers given for ANA) Anti-DS-DNA was 143 - His comment here was "Usually patients with such Anti-Ds-DNA levels should have more than a weakly positive ANA."

These are the only 2 tests that have been ordered. It appears that there are some more tests that I should have done??

They are just going to keep checking my blood, I guess until I get REALLY sick. Well I am sick of being sick. Why do I have to get sicker ???

Today was, I think the hottest day of summer here. The extreme temps make me ill as well, I get tired, and alot more aches than usual - being chilled or overheated causes flareups of my fibro. I am sitting in a room with my A/C on, wearing furry bedroom slippers & a sweatshirt. My daughter gets TOO hot, so I have to accomodate her. That is fine so long as I take care & cover up.

My nerve conduction test was done today & guess what they found? NOTHING! I cannot turn my head, EITHER way, or up or down, without a pulling sensation, can put my neck & back out by sneezing, or startling, be it awake if someone scares me, or the startle reflex when I fall asleep too rapidly. My lower back throbs at times & I have days when I feel like if I bend over, I might not be able to stand up again. The needles they used, although they were very fine, they really HURT, and my arm, shoulder & neck are all aching worse than before. The flesh where the needles were inserted feels tender & bruised.

VeeJ, I will have a look at the sticky post you mentioned, I need to learn all I can about this, perhaps print it out & take to my Dr so he can read also. I have a GREAT family Dr, who thinks OUTSIDE the box & is very aggressive about getting me tested, so I am not afraid to present 'my findings' from you all to him.

I am only 42. I am sick & tired of being sick & tired ! BTW, both my parents have some form of arthritis. My Dad has infectious arthritis, and my mom has RA. My RA levels were fine, even though my fingers are becoming mis-shapen & pointing outwards, just like my moms.

Anyways, thanks for the input, really it is so appreciated! Will post more as I find out more

Dee
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Old 07-18-2006, 02:49 AM   #6
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Dee, Since you mentioned migraines, there's also a "sticky post" on antiphospholipid syndrome you might find useful.

There's another rheumie/author whose lupus books might be widely available in Canada (hard to find here, alas): Dr. Graham Hughes. He's one of the top rheumatologists in the world, famous for his work in lupus & major advancements in antiphospholipid syndrome (APS), too. (APS is alternately known as "Hughes' Syndrome".)

Yes, I also got that ZZZZZTTTT electrical feeling right up my spine. Funny, we discussed it here a few months back, without having a proper name for it. There were several people who'd experienced it.

Stay in touch with everyone, when you can, that is, OK? Wishing you better speed and accuracy in this snail-paced diagnostic process, and better days to come, from Vee

 
Old 07-18-2006, 05:52 AM   #7
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hi Deana,

It can be so frustrating trying to get a diagnosis. Like VeeJ, I too have had many blood work ups. Since the Dr.s began testing for Lupus I have had two weak pos. sets of blood work and 4 completely neg sets. My Rheumy says he is still not certain he can give a diagnosis of Lupus but my Primary Care Physician feels certain and the Dermi who did the punch biopsy is certain.

For many years the symptoms were so vague that nothing specific was looked for. The symptoms would range from severe migranes to stomach bouts. But it seemed all would clear up by the time tests were done. I don't recall any autoimmune tests being done until I asked the Dr. if I could have lupus. I had never heard of the disease until we ran into an old friend and she asked how long I had had lupus.

I hope you find the right Dr.s who pay attention to your symptoms and don't just look at the blood work. It seems we must push the Dr.s to look for the unusual when the normal doesn't fix us. Don't give up. Keep testing and asking questions.

May God Bless Us All
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Old 07-18-2006, 06:23 AM   #8
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hi, Dee. I just found a more comprehensive list about LHERMITTE'S SIGN, the scary electrical ZAP up the spine. Obviously I'm no doctor, but here it is, for what it's worth:
  • MS
  • cervical spondylosis
  • cervical disc herniation
  • Chairi I malformation
  • radiation myleopathy
  • subacute combined degeneration caused by vitamin B-12 deficiency

Funny, I used to fit one of these to a "T", vitamin B-12 deficiency.

Also funny: I never told my suburban docs about it, thinking I'd be deemed a head case. I did blurt this out, hesitantly, to my NYC rheumie on my very first visit. He postulated anemia, which was immediately confirmed by a new round of tests. It stopped when my blood levels improved, as did the "flitting critters" sensation I had a lot in my upper arms (especially). Bye for now, Vee

 
Old 07-18-2006, 06:30 AM   #9
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hi VeeJ,

I just had to blip in and tell you that B-12 and B-6 deficiency also exist with thyroid problems and my sister-in-law's MS. I wonder how many other autoimmune problems have this as a symptom.

May God Bless Us All
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Old 07-19-2006, 10:07 AM   #10
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hey Patience & Vee,

Interesting response to the Lhermitte's sign that I mentioned. Many of my symptoms ARE in my neck. Sometimes it hurts so bad I want to vomit. However my B-12 levels are good, I had them tested not long ago. I take a sublingual B-12 supplement, as I cannot tolerate the shots. Not to mention the preservatives in them. Thanks, but no thanks! But I was B-12 deficient for years.

My ferritin levels are also very low - they came back at only 4. I don't get this as I eat alot of greens. Everything else is fine he says, I am not anemic, though pernicious anemia runs in my family & I hemmoraged badly after giving birth to my first child. Had an appisiotomy (sp?) & I was left alone to bleed in a bucket for quite a long time - I really think they forgot about me. I kept calling for help but was strapped to the table & could not move. Later a resident poked his head in the door & yelled when he saw me. Then someone rushed in & stitched me up. I was anemic for quite some time after that, but they say I am not anymore... I find that very curious. I am not allowed to give blood either because of that.

Can anyone actually TELL me what other tests I should push for from my family Dr. The weak ANA & high anti-ds-dna tells me there has to be more tests done & I have no clue what to suggest to him. He is great when I suggest certain tests & question reference ranges etc. Takes the time with me & I am lucky to have him. But what should be tested next along with the ANA & anti-ds-dna?

Now I am off to google cervical spondylosis, cervical disc herniation & Chairi I malformation

Thanks! I will stay in touch too!!

Dee
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Old 07-19-2006, 12:32 PM   #11
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Deana, hi and welcome to the board. I only found out that that shocking feeling up the neck was called Lhermitte's sign a couple of weeks ago, and only because someone on this board told me. So many things that you find out just hanging around here. I was a little puzzled that it is associated with MS, but also read that it is not exclusive to MS. Anything that might cause some degeneration in the nerve fibers could cause it, and I guess lupus might be enough. It also said it might be caused by some traumatic neck or back injury, it mentioned whiplash by name, and I did have that about 15 years ago from being in a car accident, about when I started having the shocks. Most people think whiplash is a joke, something that people fake when they are trying to get money in an injury lawsuit, but that stuff hurts for real! So I am confused about the reason for the Lhermitte's sign. But the shock of it... wow, it really gets your attention, a feeling unlike anything else.

 
Old 07-19-2006, 03:33 PM   #12
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hi gals,

I also had the shocking feeling but it wasn't in my neck. It was coming from 3 herniated discs in my lower spine. It would shoot straight up my spine to the base of my neck as if it had a specific path to run. I did not have them for a while and then they came back. My Dr. and chiropractor scolded me for not doing my stretching and pulling exercises. They tell me because of degeneration along my spine I must keep the things that are whole in shape to take the load off the ones that are damaged. I have come to where I can feel even the slightest shift in my spine, be it low or high. I don't wait anymore. I try to get in right away and have it taken care of.

As to the tests that should be ordered, there are many but I would ask for a full autoimmune panel and then redo any that are borderline or low pos. every three to six months. I think I said before, mine are not always pos. and when they have been it has been a low positive. The Dermi is really the Dr. who finally diagnosed me although my PCP was certain before I had the punch biopsies done.

I hope you feel better soon Deanne. Aquanegra, nice to talk to you again.
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Old 07-19-2006, 05:59 PM   #13
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Deana, I actually think (but I'm no doctor) that the multiple high anti-ds-DNA tests are saying something important.

This is one of the KEY & DEFINITIVE tests done for SLE, after all. You need to get someone to explain why it's NOT being interpreted as lupus, at least in my utterly non-medical mind.

To contrast your tests to what mine showed---mine was a trickier antibody showing up, anti-Ro, which can show in the SCLE subset of SLE, or in Sjogren's, or in ??? (maybe some other connective diseases, too? Not sure.) And I had a characteristic arm/torso rash. My skin biopsies showed alteration on the dermal/epidermal borner & immune "junk" build-up. But my ANA was always negative.

But I can almost (almost, but not quite ) understand how I flew beneath the radar, as my test results were not the "classic" ones. However, my Manhattan rheumie did NOT understand why my suburban drs. missed it for so many years, not one little bit. HE knew & couldn't believe others waited, counted, or whatever the heck it was they were waiting to see...

In contrast, my understanding is that anti-DNA is VERY classic, as classic as it ever gets in lupus.

But, again, I'm no doctor. Maybe you could take to your dr. some of the info found via "Resources" above, from "sticky posts", from hardcovers (like Dr. Wallace or Dr. Lahita). Highlight the key sentences with yellow highlighter. i.e., really get the dr. to read what's written about anti-DNA.

And if "no go"---maybe try another dr.? (I went through a LOT of drs.)

I hope someone else here can offer some commonsense suggestions. Meanwhile, all my best! Bye for now.

 
Old 07-20-2006, 08:10 AM   #14
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Hi again Vee!

Gee, you have been so very helpful!! Thanks for all this insight!

So do you think I should see if my dr will do the anti-ro test on me as well?

I cannot make my way around that site you mentioned for the tests, could not find anything of value, unless you can specifically give me a link?

Thanks again!

Dee
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Old 07-20-2006, 08:11 AM   #15
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Re: 'Weak' speckled pattern ANA - High Anti-DNA - what IS this??

Sorry for the double posting, the site was giving me trouble & I made two attempts to post. Errors came up & said the site was down. Just looked & my post was done twice, so I deleted one post.

Dee
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Last edited by Deana; 07-20-2006 at 03:03 PM.

 
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