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Old 10-10-2008, 10:01 AM   #1
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What was it that made you suspect Lupus & how did you get DX'ed?

Hi all,

I was hoping some of you can tell me what made you start testing for Lupus & how you got Dx'ed?

I have Hashimotos (Thyroiditis). I have a normal TSH (Although it fluctuates) but I have all 3 Antibodies.

Needless to say.........Every so often, probably 2 or 3 times a year my joints will bother me. Fingers, wrists, arms, feet. It'll last a few days. Nothing horrible, just a feeling of sore joints. Im always tired but not Exaughted.....lose a good amount of hair when i comb it. I've gotten a few sores on the inside of my mouth (4 in 2 years), didnt really hurt............My blood has been normal (Except a year ago they said I was iron deficiant) my Hemoglobin was normal. I had a ANA done once a year since 2004 & its always been normal. Now, Ive always had a bit of a flushed look in my cheeks & nose (Definately the shape of a butterfly) but Faint. It comes and goes throughout the course of the day. Oddly, it does go away & is just a blushed look. its never strong enough for someone to point out.

I went to a Derm. yesturday & she said that the Butterfly rash is Almost ALWAYS Prominent, raised, patchy, scaly, not typical to be under the skin.
She sent me to the lab for ANA, Rheu Factor SSA SSB.

She said if an ANA last year (Was done by a different Dr) was negative, it is most likely to be negative again & she said, Lets do the tests but "Im sure its not Lupus".

I guess Im just trying to figure out what symptoms did you get, how bad & how long do they last. Is the rashes bad? Do they last for days? Are they bumpy, ect.
The joint pains? Are they minor, bad, raised or pimply, just a blushed look.

What made each of you seek help & question lupus.

I would be so grateful to hear from you!
God Bless!
Rachel

PS: If so many people dont get dx'ed untill years later then am I wrong to think that you can live a normal life with it?
THX :-)))
Rachel

 
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Old 10-11-2008, 08:55 PM   #2
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Rachel, In answer to your question, I did not think of getting tested for Lupus. In June of '07 I became very fatigued. I remember having a week off for vacation and all I did was sleep the first 3 days. My boyfriend convinced me it was because I had been working so hard and wore myself out even though I knew that was not like me. In July, back at work, I struggles everyday to get through the day. The fatigue was so bad that I made 2 and 3 trips to Starbucks just trying to stay awake. Then no matter how much coffee I had I went home and fell asleep on my couch right away. So the fatigue was the worst. Then I began to have muscle pain and joint pain and low grade fevers (the fever didn't come that often). I did have the butterfly rash and pain throughout my body, dizziness, off balance and worst of all I began to be so forgetful. I couldn't remember peoples names or think of words or even finish sentences at time. OK I am talking like this is all in the past but it is not. I still have many of the symptoms I am describing today. But I went through many doctors to finally get an answer to what I have - Lupus - SLE to be exact. I went through 2 family doctors, (one telling me it was mono and then it was in my head) and the other turning out to be a very good family doctor who was just in over her head. I have a great neuro. and thankfully I don't need him right now. I went through 3 Rheumy's and landed on the 4th. who is working very hard with me to get this thing under control. It was actually the neurologist that said, "Let's run a full virus panel on her" and he found my ANA to be out the roof. It is 1:1280 speckled. I have days where I feel pretty good but never a day where I can say I have energy. Two weeks ago I had a flare that lasted about 8 days. I was in horrible pain throughout my entire body and had to take darvacette whcih I keep just for thos ebad times. I am actually starting Cellcept tomorrow. From what I understand it is a low dose type of chemo and I have read mostly good things about it so I am hopeful. I guess to answer your question, there is nothing that drove me to ask to be checked for Lupus but rather the symptoms were there and the doctors figured it out. As I said, I did however run into some bumps along the way. I had a horrible doctor that told me I had mono then took it back and said she never said that then said it was all in my head. One thing I have learned is not ot give up. I have learned to be my own advocate. I know when something is not right with my body and I will not stop at getting an answer.
May I ask how you know you have Hasimoto's? How long have you had that dx? I hope I have in some way helped.
God Bless,
Joni

 
Old 10-12-2008, 07:03 AM   #3
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Hi Joni,

Thx for your reply. Im sorry for what you're going through. It must be scary. I am waiting some test results now & have been stressed thinking, one minute....If told i do have Lupus, my life is over. (Im pretty much planning my funeral)......then I try & make some sense & convinve myself, I'll live for a few more years hopefully to raise my 4 year old.

I found out about Hashimotos because I was always Tired, losing hair, hot, cold, palpitations, high B/P then Low, Brain Fog, weight loss, then weight gain (Imagine A true MIX of Hormones never knowing what to expect).
I kept complaining to the Dr that I just didnt feel right after my son was born (Many woman will develop Thyroid problems or any autoimmune D. after giving birth).
The Drs kept running the TSH which was normal. Finally my Dr said, lets try one more thing (GEE, THX, huh?) He tested me for the antibodies. I tested possitive for all 3.Thyroglobulin, TPO & TSI. Was sent for a U/S of the thyroid which showed Mild imflamation & told Nothing can be done because they cant treat for Hypo since I do get Hyper & Vice verse. I must wait till (And it may never happen) according to my endo, till my thryroid gets "burnt out completely" then weather Im treated for hypo or hyper will be determened.
If you need any more info....let me know. Id be glad to help.

So, may I ask, how old you are & how long you have had Lupus? How do you cope? When you get a Flare what is it like? How long does it last?

Right now, Im experiencing lots of Muscle pain in the arms, shoulders, legs, upper & lower but no fever, no rashes, ect.....Just feels like I had a Tentnus shot all over, if you know that feeling.
Im getting depressed, worried & just want to be around for my lil guy.

Thx for your help!
Rachel :-)

 
Old 10-15-2008, 10:21 AM   #4
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Hello. I felt like I was coming down with the worst flu ever - everynight. But the flu never came so I knew something was really wrong when the problem persisted after a few weeks. Went in for testing and ANA was highly positive. It a different feeling of anything I've ever had before. Instead of it being "I hope there's nothing wrong" it was a matter of "oh, no..something is really wrong and I've got to get help now!" Just thought I'd let you know my experience if that helps you.

 
Old 10-15-2008, 12:46 PM   #5
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Hi Rachel,

Please don't start planning your funeral if you get a dx of Lupus. There are different degrees of Lupus (Non-organ threatening and organ-threatening) but whichever one it is, the dr. will find the appropriate medicines for you. It is common to be placed on Plaquenil, an anti-milarial that helps with the joint pain. I've been on it for almost a year and a half.

I came back with a high ANA and sed rate, positive for rheumatoid factor, positive for both Anti-Ro and Anti-La (SSA and SSB). However, I didn't meet enough of the Lupus criteria (found in the sticky posts at the top of this board). Now, my symptoms are starting to point towards RA, as well. I still don't know what this is, and it is very hard at times. I also have fibromyalgia.

Please, keep us posted and remember we are here to help you through!

 
Old 10-15-2008, 01:43 PM   #6
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Thank you too, angie & Lizzie for both your support!
I have been having the strangest Joint/muscle pain. It even burns at times & Im just EXaughted!

I am going to school right now & hope to write back more later but just wanted to say thx!

I got some results back....ANA Neg, SA & SB Neg but the Dr said hes going to do more bloodwork.

Im not sure if this definately rules out Lupus........I do have an appmt w/ a Rhuematologist in 2 weeks too.

Ill w/b Later

THX!

 
Old 10-17-2008, 08:54 AM   #7
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Hi,

I never suspected Lupus at first, as I didn't really know anything about it. It was actually a dermatologist who first suspected Lupus and also the only doctor who actually asked me all sorts of questions besides being related to my skin. He asked me if I got any joint pains, sores in mouth, fatigue, feeling worse in the sun, etc....He spent alot of time with me asking questions, then asked If I ever heard of Lupus and went on to explain some things about it. I had no insurance, but suddenly developed a rash across my cheeks and nose, which was red, raised, and sort of plaquey. At the same time, I also had a red, slightly raised, but not plaquey rash on my inner lower arms (from my wrist almost to my elbow. It was a very long oval shape and strange looking. I was in my early 20's (and I also worked outside) and so I thought maybe I got skin cancer or something bad on my face. So I borrowed some money to see a dermatologist and he suspected Lupus, and sent me for a few blood tests, including one for Lyme disease. But I could not afford to have a skin biopsy done, nor ALL the usual tests that are run. But he said I had a high ANA titer at that time and suggested that I should see a Rheumatologist. However, I could not afford to and so I never bothered, until I was in my 30's.

Besides my facial/arm rashes, since I was 19 or 20, I did get flare-ups of all sorts of symptoms over the years. Extreme fatigue almost always occured as part of those flares. Other symptoms I've had (which may or may not all be lupus related) were: severe pain & inflammation in my right ankle, then pain & mild inflammation in my left one; then the pain started migrating to other joints; I've had multiple bladder infections, I would feel like I had the flu also; I am not sure if I had fevers for the longest time, as I was not taking my temperature. Constant headaches; Brain fog; weight gain & weight loss; peeling & splitting nails; Other weird rashes on the tops of my hands, sides of my hands, sometimes on my legs; very sharp, stabbing like pains on the left side of my chest; becoming very fatigued out in the sun; hair loss, though not in patches, my hair thinned all over and I would lose ALOT of hair - I would leave a trail of it wherever I went - it would cover my pillows and bed, my chairs at work, all over my clothes, etc; nose sores; getting sick constantly; memory & concentration problems; getting hives for no apparent reason; angioedema; over the past few years, I've gotten body-wide itching without any hives; and other symptoms which I can't think of at the moment. It's a long list. And not every symptom necessarily happened at the same time. I would have flares for sometimes weeks, or months, or even more than a year. And then the flare would just end, and I would feel fine again for a while.

In my earlier 30's, I was at work, and got another severe flare & lost alot of weight, though I was already thin. I finally had health insurance and one of my co-workers kept egging me to see a Rheum. Well, she was seeing one nearby, went to an appt. one day, and came back and gave me her doc's card with an appointment on it for me! That was nice of her and the appt. was squeezed in, in about 2 weeks time, which was quick for being a new patient. I told the Rheum all the symptoms I could think of that happened to me over the years. He ran all sorts of tests, though I never know how those tests come out. In the end, he had me down as diagnosed with Lupus and Fibromyalgia.

Now, supposedly from what I've read, Lupus does not actually damage joints, like RA can. However, my right ankle (which I did see a foot doctor for years ago) over the years has pretty much totally collapsed inward and now it's bone on bone. I have spots of bone death on my tarsal and severe arthritis, plus severely torn tendons and severe thickening of my posterior tibial tendon. Mind you, I had never actually injured my ankle...all I know is that I would get these flares of inflammation, swelling, pain, and redness to the point I could bear no weight on it, and it would come and go. My MRI suggested it looked like injuries, my doc said it looked like I jumped off a building. And over the years, I was diagnosed by a foot doctor as having synovitis in there. All my other more recent docs (pain management, spine docs, physical therapists, recent foot doctor...all have asked if I have RA, but my Rheum said I don't, I do not have any RF factor. So, I do have alot of symptoms of lupus, but it seems some think I get symptoms of RA. So who knows.

One bad flare I had, I saw the Rheum, and he started me on Prednisone and Plaquenil right away. I took the pred for about 8 months (tapering off as well) and still take the Plaquenil (it's been 3 or 4 years now). The Pred was a miracle drug for me....it literally made my entire body & mind feel better. Every symptom I had disappeared. The pred even makes my finger nails grow like wild fire and they dont' split, either. Pred cured my headaches and other body aches I didn't even realize that I had. Plaquenil seemed to have stopped my hair loss, I think it also helps quell fatigue, and it was helping keep the rashes away, up until recently. Though my recent rashes have been new ones that I'd never had before.

 
Old 10-19-2008, 07:53 PM   #8
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

I have had odd pains for 4 months--migratory pains that hit my joints like a toothache, sometimes for a second other times it will pulsate for hours. It will hit one toe, then hit one finger, than an ankle, etc.. At onset I noticed extreme joint cracking, buzzing in my feet and now twitches all over my muscles. Did just find out I have a c spine disc compression and stenosis, but not sure if that would cause widespread body issues.

MRI of head fine, all blood work fine. I still suspect lupus, but my ana, anti smith--all are golden. So...I guess not?

Have been exhausted since Jan too....

 
Old 10-20-2008, 06:08 AM   #9
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Rachel, hi. I had "subacute" up's & down's from very early childhood, with three serious events sandwiched in over the decades. Three bouts required hospitalization: pneumonia (age 4), pneumonia plus encephalitis (age 5), and a wild gastroenteritis at age 34. From childhood thru adulthood, about twice yearly I'd have flulike episodes lasting two+ weeks, with fevers, infected sinuses, widespread pain, etc. At 13, I had a full year of chronic pain (shins & joints), with low-grade fever and WBC way off. In mid-20's, chronic GI problems started. Then migraines several times a year. Then episodic cystitis. Also, several bouts of urinary stones & UTI's as well.

In my early 40's, during the summer, I felt flu-like; and red targetlike lesions appeared on my upper arms & back. These became a pattern, appearing about 4x yearly, lasting 3-6 weeks before fading without scarring or depigmenting. I had them biopsied multiple times & got all sorts of wrong answers---and all my pre-existing problems worsened. In year 4, after seeing local dermies, rheumies, gastroenterologists, urologists, etc., I took myself to a teaching hospital rheumie. Dx was a VERY LOW-ODDS VARIANT, the SCLE "subset" of SLE, negative for ANA but positive for anti-Ro. Plaquenil & sun avoidance have helped me enormously. Hope this adds something useful to YOUR thinking, Vee

 
Old 10-20-2008, 03:35 PM   #10
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Quote:
Originally Posted by k2626 View Post
Did just find out I have a c spine disc compression and stenosis, but not sure if that would cause widespread body issues.

MRI of head fine, all blood work fine. I still suspect lupus, but my ana, anti smith--all are golden. So...I guess not?

Have been exhausted since Jan too....
K26....c spine compression can cause pain, spasms, and nerve pains/nerve symptoms in many areas of your body. It could certainly account for buzzing sensations and twitching, and can also account for quick pains. I had a co-worker who ended up losing all function of her right hand, then arm....then she began having trouble walking. She ended up having a huge central herniation in her c-spine and had to have surgery. And since the actual spinal cord runs through the c-spine, too much compression on the cord, if that's where it is, can become dangerous.

 
Old 10-20-2008, 03:47 PM   #11
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Wow, thanks so much for your feedback Bay. This all happened 4 months ago when I woke up with pain darting around my joints...but it would be odd, like one toe pulsating in pain for a second or hours, then moving to my hands. Also the vibration had started, now I get the twitches. I def think the compression could account for the buzzing, headaches, and twitching. However, I wonder if it could account for the random pains. The reason I have had an interest in lupus is I also noticed EXTREME joint cracking. I counted today and cracked 18 times in one hr-I never had that before. However, perhaps that is stress due to my fear of the pains etc in my body.......I became very stressed out once all the pains started to hit my body.

My joint pains have never had redness or inflammation however, sooo??

Thanks again for sharing your info

Last edited by k2626; 10-20-2008 at 03:49 PM.

 
Old 10-20-2008, 05:14 PM   #12
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Yes, sorry, random pains could be related to nerve compression. It all depends on what is compressed and where, as to where the pain is, etc. I have had (and still do, though it's now mostly controlled by medications) numerous nerve pains and paresthesias from compressed lumbar nerves. And nerve pain can act very strangely. Some days you could have intense all day long pain along the full path of a nerve, some days you can have pains in just one or 2 areas along the nerve path, and some days you can have no pain, or just having the paresthesias (buzzing, vibrating, numbness, pins & needles, etc.)

Of course I am not saying that your symptoms are not lupus related, I really don't know. But, I personally have had severe lumbar stenosis and my nerves and cauda equina was extremely compressed. I had bladder problems, nerve pains that would shoot around my hips, my groin, down my legs. I had severe sciatica one time...where for the longest time I felt the pain from my rear all the way into my outer ankle. Then some days I only felt the pain in my upper leg, some days it was just in my ankle. Sometimes I was gettting the buzzing in my opposite leg's big toe only. So nerve pain can be very strange. But then again, so can Lupus! Either way, I hope you get an answer and a treatment.

 
Old 11-09-2008, 11:41 AM   #13
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

Hi! Sorry I am late in posting. I was just looking around in this site, and noticed this topic. I too have Hashimoto's. My ana is always high, sed rate is always high (speckled) and my C-reactive protein (CRP) is always high. I don't have high cholesterol or blood pressure (so the CRP has nothing to do with heart disease). Still, I have no idea what I have.

I had pains in my knees, wrists, elbows and ankles for as long as I can remember. The first doctor I saw (in my early teens ) said it was because I was not eating breakfast! Ok. Then, when I grew older (I am 35 now) my symptoms are getting worse. I can't go out in the sun. My family makes fun of me because I am so pale in the summer time... but the truth is... five minutes after I am in the sun, I feel so sick. Really awful.

The worst flare I had was a few years ago. I went to bed fine but woke up unable to move at all. My knees, ankles, wrists and elbows were so swollen... I had to have help getting down and off the toilet! (talk about humiliating). I didn't miss work though. At the time my job was rearranging the local hospital's medical records storage room. (lots of heavy lifting and climbing ladders). But still, I pushed though it. I think that is why that flare lasted six weeks. It was awful. I went to see a rheumatologist after that (of course I was better when I finally went to see him) and told him I had to drive myself to work using my elbows.... he just asked "Why?". After that appointment, I was given no advice, no follow up appointments. My GP got the consultation report, but he just looked at it in front of me and said nothing. To this day I have no clue what I have. I am so sick and tired of being sick and tired. I am so tired of going to see people and getting no answers. I give up and have given up for a few months now. Some days I wish I could seek into my GP's office and take a peek at what that specialist said to him in the consultation report! I would love to know what they are thinking, but then scared they are thinking I am a moron and an idiot. lol

Just hang in there. Be stronger than I am. Ask TONS OF QUESTIONS because it is better to know than to be in the dark like I am.

 
Old 11-11-2008, 07:16 PM   #14
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Re: What was it that made you suspect Lupus & how did you get DX'ed?

I'm 35 and was diagnosed with lupus when I was 20 (raised, red scaly rash on my face, weight loss, joint swelling...had very high ANA, double stranded DNA...surprisingly these disease involves almost everything but not the kidneys!). For about 3 years, I was extremely sick and had inflammation of the linings of my heart and lung and even had a stroke because I have antibodies that make my blood hypercoagulable. I even had a miscarriage late in a pregnancy because of lupus. I've been through chemo, IVIG, steroids, plaquenil, and more. Doctors didn't think I'd make it into my 30's but I'm still here and doing very well so please don't think a diagnosis of lupus means a death sentence, because it really isn't. I have learned that my body has limits. I can't be out in the sun for a long time. I need to rest and not work until I'm totally exhausted. I'm not as strong or have as much endurance as some of my friends so I need to keep my own pace. I need to take my medications every day. I can tell (most of the time) when a flare is coming on and what I need to do. With all of this information, I'm able to lead a very productive life and am able to accomplish just about anything I put my mind to. In fact, there really isn't much that my friends or family can do that I can't. People say they would have never guessed I had lupus but believe me, I still do. I know it must be a very scary time for you but with help and support from your doctors, friends, and family, you can still lead a very productive life with lupus. The disease does not have to define you. There are ways to co-exist with it and you can spend many happy days with your child . Good luck!

Quote:
Originally Posted by BriansMom444 View Post
Hi Joni,

Thx for your reply. Im sorry for what you're going through. It must be scary. I am waiting some test results now & have been stressed thinking, one minute....If told i do have Lupus, my life is over. (Im pretty much planning my funeral)......then I try & make some sense & convinve myself, I'll live for a few more years hopefully to raise my 4 year old.

I found out about Hashimotos because I was always Tired, losing hair, hot, cold, palpitations, high B/P then Low, Brain Fog, weight loss, then weight gain (Imagine A true MIX of Hormones never knowing what to expect).
I kept complaining to the Dr that I just didnt feel right after my son was born (Many woman will develop Thyroid problems or any autoimmune D. after giving birth).
The Drs kept running the TSH which was normal. Finally my Dr said, lets try one more thing (GEE, THX, huh?) He tested me for the antibodies. I tested possitive for all 3.Thyroglobulin, TPO & TSI. Was sent for a U/S of the thyroid which showed Mild imflamation & told Nothing can be done because they cant treat for Hypo since I do get Hyper & Vice verse. I must wait till (And it may never happen) according to my endo, till my thryroid gets "burnt out completely" then weather Im treated for hypo or hyper will be determened.
If you need any more info....let me know. Id be glad to help.

So, may I ask, how old you are & how long you have had Lupus? How do you cope? When you get a Flare what is it like? How long does it last?

Right now, Im experiencing lots of Muscle pain in the arms, shoulders, legs, upper & lower but no fever, no rashes, ect.....Just feels like I had a Tentnus shot all over, if you know that feeling.
Im getting depressed, worried & just want to be around for my lil guy.

Thx for your help!
Rachel :-)

 
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