ita on labs and lupus

[Guest guest]

From: " Brad (by way of ilena rose) " <juanbrad@...>

Sent: Saturday, May 12, 2001 2:34 PM

Subject: my recent diagnosis of lupus & maybe help for some of you

> Dearest Ilena.....I am so sick........I just want you to share my recent

> nightmare with the group. We love all that you do.......I have your phone

> # and one of these days, I am going to surprise you and phone you up and

> talk to you personally, instead of by computer to let you know how much

you

> are loved and appreciated for being the main force in keeping us gals

> going. You are responsible for supplying and wealth of information to us

> that without your help, we would never have access to. You'll never know

> how much you are well thought of globally. Now, about me......well, I

had

> mentioned in another of my emails that my rhuematologist had just recently

> diagnosed me with lupus. Now, bear in mind that I went on SSI in 1987 (14

> years ago with symptoms of lupus but no positive blood work). I have been

> with my family doctor for a little under that many years. But, Thank God,

> I was just referred to this rheumatolgist by my attorneys a short while

> ago. Two years ago, I had one visit with Dr. Joan Campagna. That visit

> almost cost $1000 up front but my attorneys paid for it. At that time,

she

> wrote my family physician and the attorneys that I was 100% disabled and

> listed my diseases and symtpoms, but, my blood work was still negative for

> lupus. The next time I had occassion to see Dr. Campagna was in May this

> year (2001) after my bout of a 16 day illness of diarehha that put me in

> the hospital twice with dehydration. Still, nobody knows why. That next

> visit, again, my lawyers paid up front for me and at that time, my knees,

> ankles, wrists, elbows, fingers were swollen. I could hardly move, I was

> in so much pain. AT that time she said she thought I had lupus and ran

> another blood test with Unilab laboratories and it came back negative.

> Through all the years, all my blood work has been done through UNILAB.

> Three days after that visit in May, I had my 14 year flare of mouth

ulcers,

> rash from face to chest, swollen joints, headaches, soars on scalp, red

> scalp, joint pain, and my legs were weak. I called the rhuemy and she

told

> me to come right in. Although it was a hardship for me because she does

> not practice in my hometown, I had my oldest daughter drive with me again

> and I went back. She took one look at me and said that I definitely am

> showing the signs of lupus. Then, she said that she knows of a more

> specialized lab in the Los Angeles area who she want! s to send my blood

> to for a diagnosis. We had to wait for the order forms from this lab but

> she got them and wrote out the orders for me to have my blood drawn and

> sent to RDL. I went to Unilab to have my blood drawn and they put up a

fit

> because I was having my blood sent someplace else, and, I just plainly

told

> them that I think they have screwed up on my blood for many, many years

and

> I feel like I am dying and I INSIST on having this new lab check my blood.

> Medical paid for the draw by UNILAB and medi-cal paid for the diagnosis by

> RDL. I did have to pay for my blood to be sent to RDL, which cost me

> $52.50, but, RDL said they woud gladly pay for the cost, but, UNILAB was

so

> pissed at me for sending my blood elsewhere that they wanted their $52.50

> up front. RDL Reference Laboratory is at 10351 Santa Blvd. #220

> Los Angeles, CA 90025-9947 (800) 338-1918 (310) 785-3960 fax (310_

> 284-8441 <http://www.RDLINC.COM> www.RDLINC.COM if you have

> questions, ask for " client services " Now, you are probably wondering why

> I am putting all this information out there.....well, it is because my

> blood work came back POSITIVE for LUPUS. I got the call Friday from my

> Rhuematologist. I went through hell for 14 years with the symptoms, and,

> one of my silicone -affected daughters has positive ANA and I knew for

that

> number of years that I had lupus, but, nobody believed me and I thought I

> was crazy and it was all in my head. WE ARE NOT CRAZE!!! Maybe if

someone

> had listened to me way back when, I wouldn't be so sick now. If you are

in

> doubt about your symptoms, have your doctor contact this lab and have your

> blood sent there. I WILL NEVER LET UNILAB DRAW MY BLOOD AGAIN. I'm angry

> at my family physician here in my hometown. I am angry at Dow....I'm

angry

> at alot of people and companies right now and I pray to God that I get

over

> this feeling of hate. I still refuese to take the Plaquenil and my

rhuemey

> told m! e on Friday that it helps with chronic fatigue, which I so

> desperately have, it helps with joint pain, and, it stops the spreading of

> the disease. I said, Wait a minute, you told me kids when they asked you

if

> I was going to die, that people with silicone related lupus don't die from

> it. " I have a hard time believing her now because why would I have to

worry

> about it spreading and progressing if I could not die from this. I would

> rather be dead that blind from the Plaquenil and I am not afraid of dying.

> In fact, sometimes, the thought of blessed peace sounds so refreshing to

> me. No more pain... If there is anyone out there being treated for lupus

> with ANYTHING other than Plaquenil, please email me. Love to you all,

> ita

>

>

[Guest guest]

Ilena--could you please forward this to ita? Thanks so much. e

ita,

I just am now getting to check emails from last wk, otherwise I would have responded to yours sooner. I am a registered nurse who had saline implants removed in February this yr. I also have lupus, as well as Sjogrens, Raynauds, chronic fatigue and pain syndromes, and degenerative disk disease.

I'm sure you've gotten lots of info from other women with lupus and how they're treating it. But I am willing to share my experiences with various treatments both as a nurse and as a patient.

Please email me if you're interested at Cvrn8@....

Sincerely,

e, RN, BSN, LNC