Is it lupus or what?

Hi, all. I am new to the forum. My name is Stacy and I'm a 36-year-old wife/mother who was diagnosed with lupus in the beginning of 2008. The rheumatologist tested my ana, which was positive, 1:160, double-stranded dna, which was positive, rheumatoid factor (positive) complement (positive) and high sed-rate/crp. My symptoms were and still are: muscle/joint pain, fatigue, sun senstitivity, rashes, headaches, etc. My sister died from complications of lupus 7 years ago. Anyone, he started me on plaquenil, which I took for 2 months, then went to a neurologist for headaches and was told that my ana was negative and my sed rate was sky high, 100. She said she doubted I had lupus because I was black (I thought it was more prevalent in blacks).

In Nov of last year, I went to see a rheumatologist at U of M and she said she didn' t see any signs (according to tests she took) that I had lupus but that I had sed-rate and crp levels through the roof and extremely elevated muscle enzymes. She wanted to do a muscle biopsy, but I was in the process of moving out of state and was unable to have it done.

I sent all my records to a doctor in SC who is a "master diagnostician" a few weeks ago. She told me that I definitely have lupus. I don't know who to believe and I'm tired of going to doctors who scare the crap out of you if it's for nothing.

My question to the group is can I have lupus yet my blood tests change to negative a few months later? What should I do now? The doctor in SC says she can't help me but referred me to a nutritionist who she swears can cure my lupus? Please advise.

Thanks,
Stacy in NC

Writerightmom wrote:

Hi, all. I am new to the forum. My name is Stacy and I'm a 36-year-old wife/mother who was diagnosed with lupus in the beginning of 2008. The rheumatologist tested my ana, which was positive, 1:160, double-stranded dna, which was positive, rheumatoid factor (positive) complement (positive) and high sed-rate/crp. My symptoms were and still are: muscle/joint pain, fatigue, sun senstitivity, rashes, headaches, etc. My sister died from complications of lupus 7 years ago. Anyone, he started me on plaquenil, which I took for 2 months, then went to a neurologist for headaches and was told that my ana was negative and my sed rate was sky high, 100. She said she doubted I had lupus because I was black (I thought it was more prevalent in blacks).
In Nov of last year, I went to see a rheumatologist at U of M and she said she didn' t see any signs (according to tests she took) that I had lupus but that I had sed-rate and crp levels through the roof and extremely elevated muscle enzymes. She wanted to do a muscle biopsy, but I was in the process of moving out of state and was unable to have it done.
I sent all my records to a doctor in SC who is a "master diagnostician" a few weeks ago. She told me that I definitely have lupus. I don't know who to believe and I'm tired of going to doctors who scare the crap out of you if it's for nothing.
My question to the group is can I have lupus yet my blood tests change to negative a few months later? What should I do now? The doctor in SC says she can't help me but referred me to a nutritionist who she swears can cure my lupus? Please advise.
Thanks,
Stacy in NC

I am 27 years old and married with two boys. At the age of 12 I was diagnosed with Lupus, an illness that weakens the immune system. At the age of 21, and just newly married, I became very familiar with what Lupus can actually do. At first I began to feel moderate aches in my fingers and toes that would not go away. In 3 months I was not able to get out of bed because of the extreme pain in every joint and muscle of my body. My new wife had to care not just for me and our son, but also provide for our expenses.
Two months later I was admitted to the hospital for a severe Lupus flare up, Pneumonia, and Paracartitis. I was put on Prednisone, Ibuprofen, Vicodin, Protonix, and Ultram. The next 4 years would be a war, not just with my body, but with my depression, the doctor,s and our growing financial problems.
In January, 2005 my second son was born, with a father that could not hold him much the same as my first son was born to a father who could not play with him or talk to him, because of the severe pain.
After finding a different Doctor,(one who would actually listen) I was put on a different steroid, Imuran and Nexium for all the damage done to my stomach due to the use of the steroids. When I finally did get back on my feet, I visited my Chiropractor and heard of Mangosteen. Within a week of trying the juice I stopped having extreme fatigue, the dizzy spells, and the pains I had lived with for years.
This juice has helped me to reach places I never thought I'd be able to reach. I now feel much better physically than I have felt in the last 5 years of m ordeal. Thanks to diet, exercise and Mangosteen. For more information and scientific studies, go to InformationOnMangosteen.info
Jeremiah G.

hi my name is jean and i had a sister she
dies and 2007 she had lupus and she had 2 boys
she left behind and 2 sisters and a brother
we all miss her so much she never knew she had
lups i wes test for lups and i did not have it
i miss her so much i asked myself how does people
get lupus love jeab

Stacy in NC. I am 40 yrs. old and I was diagnosed in 2000 after having my daughter in Dec. 1998. Although my daughter was born with neonatal lupus, it took several years to diagnose me. My bloodwork would give false negatives but when it was positive, the levels are sky high. But I had the symptoms to back it up, joint pains, sun sensitivity, rashes and little red spots all over, headaches and fatigue. Stressful situations come out in my skin. Oh, and I am black, too. My advice to you is to take a stress management class and learn how to put your stress in it's place. I haven't taken my medicine for months, plaquenil and periactin which helps me eat. My weight is often compromised. Well, I will tell you what has extremely helped me. Exercise, exercise, exercise. I also began trying to eat right. You have to build your immune system by eating the right foods.

Hello everyone, I am new to these forums but have a question. I went to my family doctor for a severe rash that I was getting on my arms. It was so bad to the point of blistering. He referred me to a dermatologist who then did a punch biopsy. They tested for lupus but said it came back negative. I am very fatigued and have been having trouble breathing lately and my body just aches constantly! should I seek a second opinion? I keep getting the rash but they said it was just a sensativity to the sun. Any advice????

Started itchy and sore top of my scalp sought Dermatologist who said I had Alopecia. Got worse, went back 6 months later. Same doctor's office, different M.D., said "She gets the same thing", and told me to buy Medicated Shampoo. Got worse, started to lose hair. Saw a third Derm., who took a biopsy and saw NOTHING. Got worse. Saw another Dermatologist, took biopsy. She said I might have form of Lupus and sent me to a Rheumatologist. This M.D. put me on Plaquenil, 30 MGs, twice daily. She said, "We cab control the hair loss"! Three (3) additional Derms. "explicitly" told me to GET OFF this drug, it was dangerous and did not control hair loss. What the hell is going on???!!!

You should definitely get a second opinion. The blood test often give false negatives which is why it is so hard to diagnose.

Adelaide wrote:

Hello everyone, I am new to these forums but have a question. I went to my family doctor for a severe rash that I was getting on my arms. It was so bad to the point of blistering. He referred me to a dermatologist who then did a punch biopsy. They tested for lupus but said it came back negative. I am very fatigued and have been having trouble breathing lately and my body just aches constantly! should I seek a second opinion? I keep getting the rash but they said it was just a sensativity to the sun. Any advice????

First I would like to say Happy Birthday to my son Kj. I love you!
Kj is 16 today and he was diagnosed with lupus in December 08. We have no lupus or rhematoid diseases in our family. He contracted lupus in a very controversial way, mercury poisoned by silver fillings. His lupus is very severe. Kj has to take daily decodron shots (he lost 30 lbs on 120 mg of prednisone)! Monthly chemotherapy (cytoxan). He was paralyzed severely at one point.
So much to tell, but you can read his story @ http://www.kjsstory.com
1. Does anyone know of anyone who has ever lost weight on 120 mg of prednisone?
2. Is anyone (man or woman) having symptoms as severe as KJ's.
Thanks,
Mom
Taajah

If you can get to NY, do so.
I go to Hospital for Special Surgery and they are "top ranked for orthopedics and rheumatology" http://www.hss.edu/
My doctor is Susan Goodman and she is very good, patient, understanding and up on all of the latest medications (not that there are many).
The reason one doctor tells you that you have Lupus and another says you don't is because it is so hard to detect. From what I read, and through my own personal experience, it seems to me that you do have it.
However, I am not a doctor...
I went to 5 doctors in NJ, all who told me I had something else wrong with me - whether it was allergic reaction to food, something I put on my face or the best- "there is nothing I can do for you, you either need to see a gynecologist or a psychiatrist" (when that doctor had my positive ANA results in front of his face!)
That is when I went to a hematologist (Dr. Orli Etingin) in NY at Cornell
http://www.weillcornell.org/oretingin/
She told me, after I told her my symptoms (fatigue, joint pain, welts etc) that my positive ANA was the reason for all of it and she wouldn't even need to test me because it was right there in the previous doctor's lab results.
She then referred me to Dr. Goodman.
Like I said, I am not a doctor so I can't verify that you do in fact have Lupus, but what that doctor told you about doubting you have it because you are black is just not true! Plus, the fact that your sister had it and died from it *truly sorry for your loss* is a sign you may have it as I've read it is hereditary.
I don't know how I got lupus as no one else in my family has it-but that could just be that one of my ancestors did but at the time wasn't diagnosed properly as you may not have been.
I hope all works out for you!