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Old 01-23-2010, 10:01 PM
 
Location: The Ponderosa
789 posts, read 574,893 times
Reputation: 7741

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Hey all! I'd like to dedicate a thread to anyone here with Lupus.
The docs think I may have it, so I'd like to hear others stories and such.
I have every symptom of it, but my ANA's keep coming back negative...
Anyone here have somethin'?
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Old 01-25-2010, 08:57 PM
 
Location: Hawaii/Alabama
1,779 posts, read 3,299,192 times
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ANA is not definitive in DXing SLE, although it is far more common for there to be a high ANA there are cases where ANA is normal.

Your Doc needs to do a complete screening (and you really should be seeing a Rheumie since they are far better qualified to decipher the puzzle of the different autoimmune diseases...along with the many crossover diseases).

I had JRA as an adolescent and I had three miscarriages (which were later ruled as part of SLE since it was my blood clotting factor that caused the loss of my babies.)

In my early twenties I had so many symptoms and after a few times with nephritis SLE was suspected and eventually confirmed. I also have the 'pleasure' of also having FMS.

I have had three or four (I honestly cannot remember) rounds of chemo when my body almost killed me. I have had two CVAs which were attributed to my SLE (Lupus Cerebritis) which caused hemiparesis. While I was in rehab re-learning how to speak, walk and brush my hair and teeth, I fell and broke my hip along with a few vertebrae in my thoracic spine; resulting in an incomplete paralysis from T10-T12.

I have been in a wheelchair since 1995. I take Plaquenil and while I was aware of the danger to my vision (I already had a condition that would have resulted in blindness in my sixties) it was the consensus of a team of Doctors that it was my best long term chance of survival with any sort of quality of life. I became 'legally blind' in 2000 and lost the rest of my vision in 2005.

Many people consider me to be pitiable. I am absolutely thrilled to even be alive. My two sons are now grown and I am expecting my first (by blood) granddaughter and I am pleased to be around for this new generation. When I was first DX'd I was told that I would be lucky to have ten years and no one had even heard of Lupus. Most people thought that autoimmune was the same as AIDS and I was shunned by many no matter how hard I tried to explain that SLE was the exact opposite of AIDS- but people were so very afraid that many would not come withing twenty feet of me or my children.

Things have changed considerably since I was first DX'd and so many people suddenly 'have' SLE and wanted me to tell them what it was, my symptoms and meds and "Oh, what did you say on your social security app? I want to be approved on my first try- just like you!"

I have been very lucky that I have had very caring and devoted Doctors and other medical staff. There are many who denigrate Military Medicine but they have kept me alive to finish raising my children and now I am able to know the newest generation of our family.

My husband of twenty-two years has been with me through all of the horrors and his love and devotion have inspired me to fight for my life. SLE is not a walk in the park but I am still here and with my husband and children whom I adore. Take your Meds, follow the directions of your Medical staff and remember that we (we 'Lupies') deserve love and devotion.

I wish you the best of luck and do not give up! Melanie
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Old 01-25-2010, 09:15 PM
 
Location: 39 20' 59"N / 75 30' 53"W
16,082 posts, read 24,684,655 times
Reputation: 18046
It's tough to diagnose, they told me that 20 yrs ago, but ANA negative. Have no thyroid due to Graves disease and right now have nephritis, I hope you have better luck getting diagnosed than I have. I feel thankful though, it could be worse.

Quote:
Originally Posted by kittywoman View Post
Hey all! I'd like to dedicate a thread to anyone here with Lupus.
The docs think I may have it, so I'd like to hear others stories and such.
I have every symptom of it, but my ANA's keep coming back negative...
Anyone here have somethin'?
Reply With Quote Quick reply to this message
 
Old 01-26-2010, 10:03 AM
 
43,012 posts, read 95,007,900 times
Reputation: 30461
It doesn't show up in the bloodwork right away. My girlfriend was sick for about 6 years before she tested positive for Lupus.

She deteriorated rather quickly. I don't want to go into all of the details (vision, congestive heart failure, etc.) Her cartilage erroded so there was no cushioning between her bones. She was in terrible pain with the bones scraping against one another and the nerves. As a result, she could only be transported on a mattress in the back of a van. She couldn't sit up in a car ride.

She died very young of an accidental drug overdose. No amount of medication ever gave her relief from the pain.

My only advice is to avoid steroid treatment---or at least only allow yourself to be on a short course of steroids once a year at most.

However, sometimes steroids are a life and death choice. It may become a trade-off one day to save your life.

I know a woman who is disabled due to steroid treatment during cancer treatment. The steroids helped her survive the cancer treatment, but they also destroyed her spine. Of course, that's a trade off she is happy to have because she is a cancer survivor. Without the steroid she would be dead.

Unfortunately, I don't think my girlfriend's steroid treatment was necessary to save her life. It wasn't a fair trade off. It degraded her body more quickly by causing brittle bones. I don't hink the Lupus would have degraded her body so fast.
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Old 01-26-2010, 10:19 AM
 
43,012 posts, read 95,007,900 times
Reputation: 30461
I just wanted to add that I hope you don't have Lupus. Your green smilie face worries me. This isn't a disease you should want. Pray you have something else.
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Old 02-07-2010, 03:55 PM
 
Location: The Ponderosa
789 posts, read 574,893 times
Reputation: 7741
Thank you for all your replies. Wow, alot of views. This is by no means anything that I want, its more that I just want an actual diagnosis so I can start treating it because I'm starrting to feel like I'm crazy or something. Doctors dont like to to take anyone seriously. I'm sick ALL the time, its always something different. I

wouldve never even thought Lupus until I had a doctor mention that he suspected it. I started reading about it and it all came together and made sense. But all me ana are negative. My cousin and my mother have tested negative AND positive on the ana. I just dont know what to think anymore,m but really I'm getting tired of doctors. I am finally supposed to be seeing a rheumy and a gi person. I guess we'll see what happens.
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Old 03-03-2010, 09:21 AM
 
2,797 posts, read 9,327,564 times
Reputation: 1614
I just had a positive ANA, but my doctor said something about the fact that it isn't a definitive test and that she doesn't think I have it.
Have you heard of false positives before??

My only symptom is Erythema Nodosum (or swollen painful lumps on my shins).
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Old 09-13-2010, 06:14 PM
 
5,023 posts, read 4,485,071 times
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I was rx'd today with Lupus. A few months ago I was complaining of joint soreness and went to my family doc. He said to come back in a few months as he felt it was stress related. Well a few momnths later he did blood work and I initially thought I ahd rheumathroid arthritis as my mother has it and my grandmother had it very bad. So off to the rhemotologist i went in August and he gave me a script for Celebrex for the pain. My joints are very very sore and painful and recently I am just exausted. Dh and I were putting it down to teh fact that I work part time and go to school full time and also have two boys (10 & 11). I also have a hypothroid ; had graves disease at 21, radioactive iodine at 23. Now I am 45

So the blood work came back positive for lupus. He gave me a 6 week script for prednisone (steriod) and more bloodwork to be done.

Any advice, opinions or anthing. We have been thru the mill with healthcare but now I guess its my turn. All my joints are sore, especially my elbows. My legs are so painful. But life goes on and I need to get better again.
Thnaks
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Old 09-14-2010, 12:49 PM
 
Location: Hawaii/Alabama
1,779 posts, read 3,299,192 times
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Okay Dorothy-
I am so sorry that you are now a member of the Lupus club. Moist heat is what helps me the most. If you do not have a hot tub (truly Heavenly for the pain in my joints and muscles) then try a hot bath or shower. You can use a wet towel in the microwave (heat one minute at a time for three minutes- or what suits you best) and wrap a thin towel around it and apply to your body. Be careful to check to make certain that your skin is not red.

Try gentle stretching ROM (best learned form a physical therapist). Take a partner (spouse, friend, parent, sibling) so that they can help do some of the more difficult movements).

If you can afford a massage do so- but PLEASE make certain to have them massage at a pressure that you can stand, Do not get a deep tissue massage unless you have had them before and can tolerate the pressure. Have the massage therapist use the pressure that YOU are comfortable with.

Be certain to take your meds faithfully, stay out of the sun (use sunblock, cover up hats and/or umbrella) and be wary of UV lighting. If you are taking Plaquenil be certain to have regular visual field screenings as it can be damaging to your vision.

Please feel free to PM me if you wish to talk- I would be more than happy to talk to you at any time.
Best wishes, Melanie
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