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writerightmom
02-24-2009, 10:17 PM
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, :confused:
Stacy in NC

kukukajoo
02-24-2009, 10:24 PM
yes, you can be ANA positive, then ANA negative. I would assume the first doc who dx you is correct.

Find a doc near you who has good experience. Bring ALL your records to her/him.

Lupus is hard to diagnose and many wait years and years.

Can you still get the muscle bx done?

I am hoping your symptoms improve! You have found a good resource and support network here on this site too.

sick n tired
02-25-2009, 01:44 AM
Hey Stacy,

Yes you can have blood tests that keep changing...That is what mine do.

Also, Where did the first rheumatologist get their medical license, in a cracker jack box? Yes it is very prevalent with with blacks...what an idiot...I suggest you take to Master diagnostician's dx to yet another rheumy and maybe this one passed the class called Lupus 101...

mountaindreamer
02-25-2009, 05:23 AM
hi stacy,

welcome to the site, this is a great place for you to get support during this frustrating time with drs. Where in NC are you? I lived in Charlotte for many years, and feel you should be able to find great drs. are you still on Plaquenil....it takes about 5 months for the positive effects. I too thought I was having vision problems from it, but was tested and neurological opthamologist said no....keep taking it. My vision issues (as it turned out) were related to a flare, not the Plaquenil.....I learned from this group that vision issues are common during flares.....glad I did not quit the plaquenil.

If you are in the charlotte area, I will be glad to get in touch with old friends, and try to find you a good rheumy./ good luck...keep searching, there are good drs....somewhere.

My vote is for you NOT to listen to the idiot who tried to make a racial connection to your illness. Those crazy little antibodies that are attacking our bodies are on the inside....they do not know what color our skin is. ( and apparently, they don't care about our color) just a little humor to offset the crazy comment by the dr.

phyllis

rob
02-25-2009, 06:34 AM
Hi Stacy,

Welcome to our group. I wish I could say that I am shocked at the utter ignorance and incompetence of your Dr/Rheumo/Neuro, but unfortunately, I am not. You met the diagnostic criteria, and you were diagnosed with Lupus. Since you were indeed diagnosed, and there is no cure, you either have active lupus (a flare), or you have a period of calm, and sometimes remission, but the lupus is still there. You blood tests, including your ANA can swing from positive to negative often.

As far as race, Lupus is very prevalent in African-American females, but as others have said, anyone can get it. Take me, I'm a 41 year old Caucasian man, and I was diagnosed with SLE five years ago. Only 10 to 15% of people with lupus are men, yet I do indeed have the disease. And Plaquenil... Plaquenil can take as long as 6 months to begin to work, and that's almost exactly how long it took me to see it finally start to work. Taking plaq for 2 months and stopping makes no sense unless you were experiencing side effects.

Your initial rheumotologist diagnosed you with Lupus. The Diagnostician in NC said you have Lupus. You belong to a demographic where the disease is prevalent, you have had family members with Lupus, and you have the most common of all the symptoms in conjunction with a positive ANA. I think it's safe to say you have Lupus. One thing I would suggest, because it works for me, is to be up front with all your various specialists in the fact that you ARE NOT seeking a diagnosis, you already have that. Tell them you are seeking TREATMENT. If they want to "undiagnose" you, walk out and find someone else. Educate yourself so you can be your own advocate. Hand carry your records to appointments. Hang in there, and you will find a good rheumo who will be able to help you.

Come here anytime you need to talk, laugh, cry, or just hang out. There are many years of collective experience here from people who have successfully lived with lupus for a very long time. Never forget that the Dr's work for us. Welcome, please make yourself at home.

Rob

BonusMom
02-25-2009, 09:53 AM
Welcome to the best site for lupies!

I'm not a seasoned pro, so don't have much advise except to say that I would be very hesitant to treat with anyone who claims they can "cure" lupus with nutrition.

Welcome aboard!