very very confused

I don't understand how quick doctors are so quick to undiagnose. What kind of blood work showed up positive before? Was it a particular ENA? I believe that the Pred can change your results as I have heard many on here say so. So did he say you had the skin form of Lupus (DLE or SCLE)? And I'm confused that he says your in remission but don't have it, if you are in remission than you do have it... maybe he meant that the Lupus was not active at the time? I would get a copy of your lab work and make an appt with your rheumy to discuss. I think that a rheumy should be the one to confirm if you have the systemic kind of lupus or not, not a dermy IMO.

I'm sorry hun, hope you can get some answers soon. I'm sure there will be more here to give you some insight.

Take Care

Remember that the dermo is NOT the lupus expert. A rheumy who is specializing in auto-immune diseases IS the lupus expert. I would take anything a dermo says about it w/a grain of salt. Don't let it panic you, it's just a name. The most important thing is how you are feeling, and if your symptoms are being controlled.

Thanks guys I just talked with my Primary Dr and she is just a nurse Practitioner and she agreed with you guys. Wait to see the Rhumy. I was just resting and feel better now.  I do not have a regular Dr as I go to a Naval Hospital. Most are deployed and we have to be happy to even be seen. She does get you to where you need to be. I am grate full for that.

Hi Barbara Lee

         I got to the Naval Hospital Jacksonville Florida. I use to go to Bethesda about 12 years ago. We lived at NAS Patuxen River. My nephew Live in Waldarf MD. He is a machanic on the Admiral of the Coast Guards plane. When the Admiral flyes Jeremy is one of the ones who flys with him. I do not know how it is up there for military staff but we are very thin down here. We have alot of reservest that are here for a year and then gone that is why I have nurse Practitioner. I am ashured to see her every time. The reservest are there and then gone so much that you hardly get to see them. Oh well I have all my labs out so I can bring them with me. Here is a question. I am right at the door step of going for my trial for Disability. Should I bring my labs from the Drematologist with me or not? Should I bring them to the new Rheumy and should I give them to my Lawyers? Imput please. 

              Thanks All.  

Hi Denise:

To answer your question about giving your labs to your attorney, I'd say that's a tough one. I'm having my SSDI hearing next Thursday. I made sure that my labs that were positive were given for the Judge to see. The best thing that I have, according to my attorney, is the form that my doctor filled out stating exactly what I can and can't do. My paperwork is focusing on a specific period of time August 2001-April 2004 and I have to say that I wasn't nearly as sick then as I am now. I honestly don't know what my chances are at getting my disability.

I'm thinking that since I've got a blood cancer that will result in my death, the judge should rule in my favor. However, it's never good to jump the gun and assume I'm going to win my case. I'll see what next week brings. I'm very worried as I had on rheumy state that it was "impossible" to have lupus w/o positive blood work. I'm sure that had a lot to do with the denials twice for me. I'd suggest you ask your attorney what they think is best. That's what they are getting paid for if you win your case. I wish you well with your hearing, do you have a date yet?

Bethesda has a lot of doctors there, as Bethesda is a teaching hospital. So when I'm admitted to the hospital I get this huge group of doctors treating me. I'm usually in the hospital every 8 to 10 weeks or so. I follow a pretty set pattern, my labs start to drop and I need blood, my pain shoots out of control and my fatigue worsens. After 3 to 5 days in the hospital with IV pain killers, blood transfusions and platelets my counts start to rise and I begin to feel better. Not one of my specialists can tell me why this happens. To answer your question though, we've got plenty docs at Bethesda. I hope you have a good day.

Love,
Barbara

    

Ah yes Barbara I do now remember them being a teaching hospital. When I was  there for infertility testing I was in the stirrups and 5 Drs. came along for a look see. My husband wanted to know what was down there he was missing. Yes, I do remember those days. My husband could not figure out that when I would sit down the highest ranking officer would sit next to me and just start talking to me. That happened at Annapolis a lot when he had to go to dental and what was good about that is when he come out he could not talk. I am just drawn to those stripes and gold metals.They do look handsome. My neighbor is a young pilot and when he come out in his dress uniform I am right out there getting a peek. Ah those young ones.

            Good Luck with you hearing.

Denise - Guess what... I had the same thing happen to me recently, where my ANAs have been high for years and now all of a sudden a negative ANA. I swear it was a fluke. The doctors at that point were unsure of whether I had Lupus, Scleroderma or a mix of 3 diseases. They went back and reviewed my medical records and, again, determined I did/do have Lupus. It is very confusing. My bloodwork changes from year to year and different things show up on different years. They say I have a very unusual case of Lupus and I seem to get all the rare complications of the disease. Like CNS Lupus wasn't rare enough. Honestly, unless they study Lupus, etc. on a regular basis most doctors really don't have a solid knowledge of the disease and the associated bloodwork. I would get a second opinion from a rheumatologist. Your rash may be a symptom of Lupus without the bloodwork verifying that. My daughter had various rashes including the butterfly rash, they believe she has Lupus (probable Lupus) but they can not confirm the diagnosis because her bloodwork is negative. Witnessing her flares and symptoms, trust me, I don't need a doctor to verify it. She meets criteria without the bloodwork. You may also. Different doctors have vastly different opinions. Check with the specialist and gather your entire medical history for him/her to review. I wish you the best. It can be a real pain in the rear. Was for me. Still may be again in the future. - HUGS - Kristin

Rosie,

My dermy also dx'd my SCLE (Lupus rashes) but he even said that he would not dx SLE that would be up to the rheumy. It makes sense since the dermy can't really determine the systemic kind. I can't believe that he didn't refer you to a rheumy though because even though you can have SCLE by itself, its always best to check for SLE. I'm glad you were able to get some good advice from your support group. Sounds like a great bunch of people, I started going to a Lupus support group a couple of months ago and love it!!

Hi all,
Just wanted to add that from my reading on the effects of cytokine and anticytokine therapies (I'm still trying to figure out what Dr. Frankenstein did to me by giving me interferon alpha, an immune booster, with an already elevated ANA and AI problems, I guess they just wanted to see what would happen!) anyway, from what I've read, interferons, which are chemicals in the infection fighting parts of your blood, when they are elevated constantly as they are with long infections, allergic reactions and exposure to toxins and stuff like that, will cause your body to make antibodies to different parts of your body, in lupus, to your ds-dna. Levels of anti-ds-dna can change if your body gets burned out from producing lots of it, or if you go into remission. I think these things are produced by organs like the liver and spleen and are in the white parts of your blood, rather than the red parts that are made in the bone marrow. Just like a person with liver disease will experience high levels of liver enzymes, after the liver becomes damaged enough, the enzymes drop, not because the person is well, but because the liver can't produce them right then. Same with diabetics and insulin. I think that a lot of docs don't take into consideration that labs can change like that based on your ability to produce the chemicals that cause an abnormal result. In other words, you need to be healthy enough to be sick in their eyes. I don't see why that can't happen with anti-ds-dna antibodies, since it happens with many other antibodies we create. Also, your medicines may be working, so you aren't making as much antibodies. There's always a chance for lab mistakes and such as well, so I would just try to get it repeated again until it comes out positive and be sure to get a copy of the old positive labs. Well, I hope that you get this sorted out and like the rest, I would trust your rheumy and yourself and your own feelings and knowledge of your body. Perhaps you are in a remission of sorts. Take care and let us know.

Part of what Voltaire said does hold true- the part about knowing nothing about humans. After all, most doctors lack the ability to come down to the patient's level and be human with them. Or at least that is my experience. I have met a few for whom the last part is not true. The knowledge about medications- well, a lot of doctors are ignorant there too. Sorry but they prescribe based on what the companies and their research says not on their own understanding of how the medication works and its chemical composition. The diseases- well with lupus ironically much of what Voltaire holds true (cancer too) but normal illnesses they seem to have a decent grasp of.

I know my rheumy says they still do not understand enough about lupus or the meds used to treat it.

Yet Voltaire's words are out of date and need an upgrade.

Poor old Voltaire! I have an MA in English, so I like the old musty stuff and it's amazing how many of these little witicisms still hold true today. Though the "practice" of medicine has evolved since Voltaire's day, I believe that there are probably attitudes among members of the medical community that are perpetuated through the reading of accepted texts and texts based on texts, just as they are in the field of literature and literary criticism. I actually know doctors who would agree with Voltaire. There are many diseases and conditions who origins still baffle the doctors. For many medicines, the inserts clearly state that they don't know exactly how these drugs work, but they will make assumptions based on research. That is not the same as knowing. And as for knowing their patients, most doctors don't know their patients, they see so many and the patient is lucky to see a spark of recognition in the doctors eye that says, I remember you. That's not true for all docs, but throughout time, I'm sure there's always been some docs that really don't know their patients, can't relate to them, and there are patients who lie to their doctors, so the doctors don't know them. It's rare if you can know or be friends with your doctor, I certainly don't run in that social class, and some doctors don't like to treat their friends, some do. The intricacies of the human body are still frought with mystery so there is the unknown there. With so many new drugs, shorter appt times, and the enormous number of differnt illnesses and syndromes we have identified these days, actually I think in some ways Voltaire's statement is more true today than during the days of rationalism, where the doctors were treating people's passions. I like a doctor that will admit he doesn't know something, it means he's honest. My internist would definitely agree with Voltaire and probably laugh at how true it is. Doctors work based on hypotheses and often trial and error, whether medicine will ever proceed past that point is anyone's guess.