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Thread: Not sure if I have lupus or not.. what do you guys think?

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    Default Not sure if I have lupus or not.. what do you guys think?

    Hi there. My name is Kim. I am 39, married, with four-year old identical twin girls. I taught fifth grade here in Utah until five weeks before I delivered. Took a year's leave of absence and here I am four years later... still staying home with my babies!

    I've been struggling, for a year now, with strange symptoms that no doctor (and I've been to a LOT of them over the last twelve months!) can seem to definitively diagnose. "Lupus" has been on the table, then taken off, then put back on, taken off and put back on again. I have been on methotrexate, plaquenil and prednisone. None of which have done what I had hoped. The symptom that bothers me most is that I can't close my fingers into a fist. They don't hurt (unless I try to force them), but they won't bend. I can make a circle with my fingers touching the tip of my thumb, but I can't go any further than that. My right hand is considerably worse than my left, but I do have trouble with both. Does anyone else have this? My ANA is consistently very high. I have had blood tests, MRIs, CTs. I've participated in a grand round study (lots of doctors coming to look at me during a period of about an hour) I've seen three dermatologists, three rheumatologists, and my primary doctor. I am getting so frustrated. My current rheumatologist has diagnosed me with "indifferentiated connective tissue disease"... meaning that I show symptoms of several CT diseases, but no hallmark symptoms of any specific one. I do have redness on my face from time to time. That's why lupus is back on the table. But it comes and goes. And it doesn't really look like the typical malar rash. It just looks like I've got a sunburn. The prednisone helped my joints alot, but did nothing to decrease the inflammation in my fingers.

    My girls are in the bath and are impatient to get out, so I need to go. I would be so grateful for any thoughts and/or advice.

    Thanks!

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    Kim,

    On the rollercoaster ride I see..hang on, it can be a long bumpy ride. Hope you find what is ailing you soon.

    From my understanding Lupus is a accumulative disease, not all symptoms are felt at once and not everyones will be the same. There is a criteria, 4 of the 11 have to be met. A good book is The Lupus Book by David Wallace, MD. Check it out.

    Have you ever had a biopsy of you facial rash?

    I have been diagnosed with Lupus SLE and Sjorgrens Syndrome.
    I had a positve ANA.

    I can tell you what I feel and look like....a mess.

    My malar rash, came and left without drugs. Unknown I had Lupus at the time. It would be bumpy and dry at times, but always had a red glow from red to mild pink, cheek to cheek over the nose. Today, for the last year it has been with me. Since dosing with Plaquenil it has greatly diminished, looking like a mild sunburn to pink.

    Extreme fatigue that no amount of sleep, naps, rest cures. Yawnies from dawn to dark...

    Joints pain and stiffness that left me in bed for days. Unable to walk. Unable to turn a door knob or hold a toothbrush. Too weak to hold anything up or even myself.

    Extreme muscle pain, forearm, biceps, back, thigh, calves, feet and it wasn't from lifting weights. Just because Lupus decided that is what I would have. Balls of my feet, heel, ankles, knees, hips, back, neck, shoulder, elbows, wrist, fingers were affected. If it bent is didn't anymore. My palms ached something awful and walking felt like I was stepping on marbles. All from inflammation.

    Nose ulcers for months, I haven't had one for five months.

    Hair loss. That when it grew back I look like I had a soft halo in the light. Holy, no, but I got the spirit in my heart.

    Malaise. Unable to concentrate. The fog. I forget anything, from names, to places, to where a dish goes.

    Hives, rashes, the size of plates. Sometimes, they sent me to the hospital for the shot. Unable to breath properly, shrinking throat. Currently I have the rash. Kind of looks like diaper rash on my stomach. Here today, gone tomorrow and back. Cortizone-10 doesn't rid it.

    Also the invisible rash...itch but no rash to be seen.

    UTI, protein in my urine. Once each.

    Headaches. Teeth pain. Eye socket pain. I would love to take them out and massage my gums or my empty eye sockets.

    Fluroscent lights and sun hurts my eyes. I even wear sunglasses in the house and dress in long pants and long sleeves for twelve months by day. By night off with clothes. If I could I would run naked in the dusk. What would my neighbors think in SC? When I lived in Seattle, I used to sunbathe bare along the Skykomish River at Index. I miss those hot summer days cooling off in the moutain waters. Those days are gone...

    Dry mouth. Dry gritty eyes..but I still can cry. For others, for myself.

    Outside in the heat and sun too long my symptoms magnify and I take to the bed.

    Most recent..pleurisy. Extreme upper trunk pain...left untreated for over two months. The inflammation spread into my neck, jaw, back, arms and spine. My doctor didn't address it properly two months ago. I suffered needlessly physically and mentally because of the extreme pain, I went into the dark hole. Now? I found the ladder and came out.

    So basically, eventually no part goes unscathed. Mine is mild compared to many others.

    Don't let even the smallest detail of a pain, of a change in anything not be told to your doctors. What maybe minor to you, not worth mentioning can be the small piece of the puzzle that can lead to your diagnosis.

    Saysusie, moderator will be back on the 29th or so...she has a wealth of info stored on her PC and her brain. Look for her. She can address the how they diagnose and etc..

    And welcome to Lupus.com. As you probably have noticed already..wonderful, wonderful people here, who are trying to find ways to put the Lupus flame out...

    Hang in there,
    Oluwa

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    Hi Kimntwins :lol:
    As I was reading your post, I was thinking that you might be suffering from several different auto-immune disorders (aka: undifferentiated connective tissue disease or Mixed Connective Tissue Disease) as many of us do. Now that your doctors have at least made that diagnoses, they will probably start trying to find out which disorders you are suffering from. Although, many doctors, after making that diagnosis, do no further testing and just begin to treat the symptoms.
    Many of us suffer from Lupus as well as other disorders (both connective tissue disorders and other maladies). Some of the common connective tissue disorders that can be seen with Lupus are:
    *Fibromyalgia
    *Sjorgen's Syndrome
    * Raynaud's Syndrome
    * Scleroderma
    * Rheumatoid Arthritis
    * Polymyositis
    * dermatomyositis
    Many connective-tissue diseases share similar symptoms and this is what makes it so difficult to make a specific diagnosis. Rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), systemic sclerosis (SSc), polymyositis (PM), dermatomyositis (DM), and Sjögren syndrome (SS) all have very similar physical and clinical features. Screening serology findings, such as rheumatoid factor (RF) or antinuclear antibody (ANA), may be positive or negative under some of these clinical circumstances.
    Patients who present with symptoms, positive blood/lab results, or physical symptoms consistent with one of the connective-tissue diseases, but who do not fulfilling the classification criteria for any one specific connective-tissue diseases will usually be diagnosed with undifferentiated connective-tissue disease (UCTD), as you have. UCTD is a relatively new entity and preliminary classification criteria for a UCTD diagnosis includes: (1) signs and symptoms suggestive of a connective-tissue disease, (2) positive ANA results, and (3) a disease that lasts at least 3 years.

    Your hands may be presenting symptoms of scleroderma or polymyositis or maybe even dermatomyositis or Rheumatoid Arthritis. As these are some of the connective tissue diseases that many Lupus patients also suffer from, it might be advisable for you to ask your doctor about these possibilities.

    I am happy that you found us and that you joined our family. There will always be someone here to help you, answer your questions or just listen and provide comfort, if that is what you need. I wish you the very best.

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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