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View Full Version : Hi and not sure what is going on



SuzS
12-09-2006, 01:46 PM
I haven't been diagnosed definitively with Lupus yet, but beginning to think it may make sense.

I am 56, eat fairly healthy, walk daily and aquajog on the weekends. In the last couple of years I've dropped from a size 12 to a size 6, and am happy about that, but not sure what is going on.

I have had GERD-like symptoms, heartburn consistently for the last year plus, though not a smoker, barely drink, normal weight, don't eat spicy foods. I have extremely severe arthritis in my neck that I thought was simply from a bad whiplash in my 20's. Additionally, when I get up in the morning my joints are very stiff and sore. I know I'm not a spring chicken, but seems like a little much for my age. I also have cataracts in my eyes.

The other night I was taken by ambulance to the hospital for what I though was a possible stroke (though no motor problems such as speech, walking problems, drooping of the face etc). It was just sudden complete numbness of my right arm.

I went to see a neurologist at my HMO yesterday and he said it is very unlikely I had a TIA or mini-stroke. He thinks it was possibly my gallbladder, but in looking at my chart he thinks I may hve lupus.

I lost a best friend to lupus so it really scares me. On the other hand that was more than 20 years ago, and I know things are a lot better now. Plus she didn't take care of her lupus problems.

today I had fasting labs done, so hope to get some answers soon. Anyway, sorry fo rambling. Anyone have any thoughts?

Thanks in advance.

Suzi

MARYCAIN
12-09-2006, 05:49 PM
Welcome to the forum. I hope you will feel at home her, and find answers to at least some of your questions. But please remember that none of us are doctors - we will try to give you the best, most-current information and share our own experiences, but none of this is any substitute for good medical care.

Have you been evaluated by a gastroenterologist (a doctor who specializes in diseases of the digestive system) about the cause of your persistent heartburn? If you are having symptoms even on medication, then this really needs to be addressed. And heartburn with weight loss is a very troubling pattern. Although lupus can cause heartburn, it is not a typical cause of heartburn symptoms in women, and heart disease always needs to be ruled out as a cause for "heartburn" in women, especially in a woman over 50. So this is something you need to bring up with your doctor. A GI doctor can also evaluate gallbladder function to see if it is causing problems.

Did your doctor mention any specific things that lead him to suspect lupus? Because lupus can be very difficult to diagnose, especially in someone over 55. Lupus is a chronic, lifelong disease, which most often affects women in the child-bearing years (after puberty and before menopause). Children, men, and older women can also be affected by lupus, but this is less common, and the pattern of symptoms is often different in these groups. Lupus-like symptoms, especially arthritis, can be caused by many other diseases. So your doctor has to look carefully at the pattern of your symptoms, and any abnormalaties in your lab tests, to determine whether lupus is a possibility.

When lupus develops in someone over 55, it is called late-onset lupus, and the pattern of symptoms, and lab abnormalities, are often different from someone who develops lupus at a younger age. The average age of onset in late-onset lupus is 59 years, while the average age at diagnosis is 62 years. So this illustrates how difficult it can be to diagnose. Some medications commonly prescribed for heart disease and high blood pressure can also cause a drug-induced form of lupus. So your doctor will want to know about any medications you are taking. In people with lupus, cataracts are more likely to be caused by steroid treatment than the disease itself, so they may be more related to your age or to UV exposure than to any underlying disease. Symptoms of late-onset lupus are usually mild and may include arthritis, muscle aches and pleurisy.

Although it certainly sounds like you have some type of arthritis, you will probably need x-rays and blood tests to determine whether this is osteoarthritis (caused by the normal wear and tear of aging) or some type of inflammatory arthritis such as RA or lupus. Your doctor will also need to rule out polymyalgia rheumatica, which is a very common cause of arthritic symptoms in women over 50, and often causes pain and stiffness in the neck, shoulders, upper arms and thighs.

I hope the lab work you had done will shed some light on what's wrong. But please have the persistent heartburn checked out by a specialist!

SuzS
12-10-2006, 09:58 AM
I've worked as a medical secretary for several years so have some knowledge. I have seen a gastroenterologist for the chronic heartburn recently, and was scheduled for an endoscopy/colonoscopy, but the HMO cancelled it as the doctor wasn't available. Also, I wanted to get a better feel for what is going on with me prior. I won't delay too long. I think the doctor I saw was concerned about the chronic heartburn, as well as other inflammatory problems that are unexplained (gallbladder, bladder, bronchials, larynx, etc. for the last few years). Yay, a doctor who actually reviews a chart in lieu of just looking at what is in front of him/her at the moment.

The weight loss can also be explained by my slowly eating less due to necessity (GERD problems), and my ongoing exercise program. It has been gradual as opposed to sudden.

They did extensive labs yesterday (after fasting) to see if Lupus is a possibility. I know it is usually something affecting those in child-bearing years, but the doctor brought it up, so. . . he wants to rule it out.

Oh, I wanted to ask you. Are rashes always present in someone with Lupus? I have redness around my t-zone-not extreme, but a little. I assumed it was rosacea. If it is always a symptom, I would assume I don't have it.

You guys are doing a wonderful job here, and thanks for the support.

Suzi

MARYCAIN
12-10-2006, 11:03 AM
About half of the people with lupus have what's called a "butterfly" or malar rash - it can be mistaken for rosacea. It usually affects the cheeks and the bridge of the nose, but not the folds of the nose. Although it's called a "rash", in some people it looks more like a a slight flush or a bad sunburn - other people have red raised patches, or even small welts or blisters. So even doctors sometimes have a hard time telling whether it is a lupus rash or not. The rash of lupus is usually photosensitive, so a rash that appears or worsens after exposure to sun or UV light might be lupus related. Lupus can also cause other skin lesions, called discoid lesions because they are shaped like a coin. Although a malar rash is usually painless, discoid lesions may be very itchy or raw feeling. There are other medical conditions that can cause photosensitive rashes, so even a butterfly rash is not specific to lupus. And half of patients with lupus have no butterfly rash or other skin lesions, so the absence of a rash doesn't rule out lupus as a possibility. Sorry, I know you were probably hoping to hear otherwise.

One symptoms that is almost universal with lupus is extreme, sometimes overwhelming, fatigue. It is often the first symptom to appear and the one hardest to treat. Although there are many medical conditions that can cause fatigue, I have honestly never known anyone with lupus who didn't experience unusual fatigue to some degree. Even type "A" "get up and go" people find that their "get up and go" got up and went. The fatigue can make it hard to think or even function. Many people with lupus also have problems with hough or memory processes - what doctors call "cognitive dysfunction" but most patients call brain fog.

I know it's really hard to wait for answers, but hopefully your test results will be helpful.

SuzS
12-10-2006, 02:48 PM
great information. Well, I don't think I have the butterfly rash, and I know my friend who had lupus many years ago had a distinguishing rash on her hands.

I no longer do lunch at work with friends most of the time I am too tired, and take a nap.

As you said, best to just wait for the results and see if they are definitive, or we need to delve further.

Suzi

Missy
12-11-2006, 09:11 AM
Good luck, Suz!

I know that almost all of us here can sympathize with the feeling of knowing something is wrong with our bodies and the seemingly endless waiting.

Please know I am thinking of you and hoping for your wellness.

Take Care,

SuzS
12-11-2006, 04:36 PM
Thanks Missy. I appreciate that.

Suz