Jenny, I am at a loss. It is quite clear that you probably have lupus. Lupus can fluctuate and you can be okay for days, weeks or months and then go into a flare. You have the antibody, clinical and symptom proof for lupus. Do you mind my asking where you live? Did you go to Mayo in MN, AZ or FL? I might be able to recommend a rheumatologist who is good. And a dermatologist.

Lupus is dangerous. Has anyone checked for protein in your urine or done a chem panel looking at your kidney function? Both should be done. There are many more drugs available than Pred. With your GI bleed history, a good doc wouldn't recommend Pred anyway. Do you still get rashes? What about Plaquenil (relatively contraindicated if you have MG)? And did anyone do a lupus band test (skin biopsy)? Good grief, I'm really blown away by the lack of thorough evaluation and diagnostic expertise here. Don't let your doctors off so easily. It's their JOB to figure these things out. Could any of us keep our jobs if we didn't do them well or left them unfinished? Well, a lot of us MGers can't work.

People with cancer "look fine" too. I hate that prejudice. It's much better to look good than to feel good, right?

So, you have phospholipid and cardiolipin antibodies?

Sorry, I didn't mean to bombard you with questions but that's how my mind works. How a patient "thinks" about doctoring is often more important than facts and algorithms. My gut instinct is saying that you have lupus but I'm not a doctor. It's not nothing with all of those positive test results and symptoms. I really hope you can find some good doctors and sort all of this out. We all deserve to have good, prompt medical care and to feel the best we can.

Annie

A "diagnosis" is basically a cluster of symptoms and signs, that were described by astute clinicians who tried to put order into the chaos of medicine.
A diagnosis, is no more than a tool and not a goal within itself.

In some diseases (such as the ones I treat) you can actually see the cells inflicted by the disease. This makes it much easier (even though we too face problems every now and then, in making the exact diagnosis and also in deciding regarding the extent of the disease).

In other diseases you can't see the cells so you have to use surrogate markers, which are various tests that have been found to be positive in the vast majority of those who have the disease, and negative in the vast majority of those who do not have the disease. But, mostly rely (just like those who initially described those diseases in the past) on your clinical skills.

As to treatment, one always has to balance the potential risks against the potential benefits. There are circumstance in which it is a "no brainer" to decide on potentially harmful treatment, because the risk of no treatment is enormous. But, more times than not, the risk/benefit ratio is not so obvious.
Under such circumstances every factor has to be taken into account, including the patient's preference. (some patients are ready to take any risk for a possible benefit and others are the exact opposite).
Sometimes a "wait and see" approach is the best, not because the patient is not ill and couldn't benefit from treatment, but because the currently available treatments carry much more risk than the illness itself. Or because with the currently available treatments there has been no advantage (or even harm) with early treatment.

Lupus (very much like MG and many other autoimmune disease) can be a very mild illness requiring very little or no treatment or a life-threatening condition requiring aggressive treatment. It requires a good physician with a lot of experience to make those decisions, together with you.

Neither the fact that you "look good" and are able to lead a good life, nor the fact that your illness doesn't fit the exact "box" (Procrustean bed) of the diagnosis should be the factors that decide on your treatment.

I have had patients with leukemia who looked good (which to me was a reflection of their healthy self, we had to fight for and only more of a reason to fight their illness) and patients with leukemia who didn't exactly fit the "box", and had I take this approach none of them would be alive and well today.

In the early days of my training being very puzzled by the fact that the morphology and the cellular markers of my patient's malignant cells didn't fit (so I found it hard to make an "official" diagnosis and start treatment for that specific type of leukemia), I consulted the head of my dept. who said- I don't understand why you expect a malignant cell to know what kind of proteins it should express on its cell membrane. Trust what you see before your eyes.

Medicine is not an exact science and expecting everything to fit, leads to exclusion of too many patients. It can also lead to serious management errors. Sometimes what doesn't fit is a clue to a different underlying mechanism and leads to a different treatment approach. Sometimes what doesn't fit, should just be ignored because it is of no importance (and this again requires clinical skills).
And sometimes even the best physician doesn't know and errs on one side or the other.

Thanks, Tatia, for your suggestions!

I've started looking into mast cell disorders a little most recently, but haven't come across anything that feels like an "aha" moment. I will continue to research that area though since it is new to me. Thanks for the forum link. I've found forums to sometimes be more helpful because then I can get a practical view of the illness from the perspective of someone who lives with it every day.

Since I live in the DC metro area, this seems like a no-brainer. I talked to one of my doctors at one point a couple of years ago (when I was in the life-threatening GI bleeding situation) and he felt it was unlikely I would be accepted. He said he had other patients sicker than I that he had not been able to get in. Since this is a doctor I have a long history with and is someone I trust, coupled with the fact that I was so devastatingly ill, I let it go. Maybe it's time to look at this possibility again. Thanks for the reminder!

Jenny

Thanks, Annie. I've thought that too (re: lupus), every time I go into another downward spiral. As someone else mentioned, though, the diagnosis itself is less important than the treatment. But many of the doctors I've seen are unwilling to treat without the diagnosis. During my bleeding episodes, I was sent to Johns Hopkins for an evaluation for Ehlers-Danlos syndrome. The genetecist I saw there took my history and told me to go to a rheumatologist. I told him I had done so many times and that the rheumy didn't help. He asked me how I deal with my health situation then. I told him I manage crisis to crisis. Then he looked at me and asked, "How's that working out for you?" And it's true. It's not working out so great for me.

I live in the DC metro area. I went to Mayo in Minnesota. I am awaiting the results of the MG tests and a re-test of ANA and then I plan to contact them again to see if they can offer any suggestions.

I believe this has been done and I've not generally had any problem in these areas (fortunately!)

I don't generally get rashes anymore. When in the sun and when I exercise, I get red in the area you would typically see a malar rash, but it subsides after a few hours of not being in the sun and not exercising and I don't know if it would qualify as a rash, per se.
I've looked into plaquenil in the past, but never pursued it. When I'm doing well, I don't want to rock the boat, and when I'm not, we're dealing with more of a crisis and changing so many things because of that, so it's hard to make one more change at the same time. I'm almost as much to blame as drs for this because I've had so many complications resulting from unnecessary surgeries and horrible side effects from medications that I'm wary too.

There are many times when I completely agree with you. But there are moments when I recognize how complex and convoluted my situation is and how worried doctors must be given the excessively litigious society in which we live. I am frustrated with my circumstances and get really upset when I work with idiot doctors, but there have been a number of good ones along the way who have tried, but just haven't known how best to proceed. Often I wish I knew more myself so I could manage my own care better.

I have anticardiolipin antibodies which are part of the diagnostic criteria for antiphospholipid syndrome diagnosis. They haven't been tested in years because it doesn't really matter. This is a diagnosis that sticks regardless of a return to titer normalcy.

I didn't feel bombarded. I also think and work systematically in an analytical framework. sometimes this really helps. At others, it causes me to dwell on things a little too much as I try to get every ounce of information possible out of every experience. Since I recognize this flip side of the coin, I work really hard to limit the time I allow for analysis of events that feel traumatic to me (like my "episodes").

Anyway, thanks for your suggestions, comments and support. I really appreciate your insight and your willingness to share.

Alice,

Thanks so much. You really hit the nail on the head! As my dad constantly reminds me - it's the PRACTICE of medicine. I tell him I don't want to be practiced on anymore

I think good doctors are invaluable, even if they also end up being helpless in some circumstances.

And the balance between risk and benefit is both important and difficult to maintain.

Thanks again for your comments!

Jenny

Hi Jenny, Oh my goodness! I've never seen anyone else with the same collapsing and not being able to respond symptom! We are like twins. I have APS also and just diagnosed with MG. I also have CIDP and a combo of sjogren's syndrome and Lupus. Any change you might consider e-mailing me **? I'm wondering because I don't frequent neurotalk but i really really would like to talk to you. Knowing there is someone else out there like me makes me feel so sane! I'd love to speak to you about your experiences. Hang in there. Hope to communicate with you soon.
-Dawn

Jenny, You might want to contact the Lupus Foundation of DC. If you lived in MN, I could've given you the name of the most awesome rheumatology group!

http://www.lupus.org/webmodules/weba...gton_home.aspx

With nephritis, you may not have any symptoms at all. No pain, no nothing. So having a regular urinalysis is usually routine for anyone with lupus (if you have lupus).

Helping patients involves keeping the entire body (and spirit) in mind, no matter what your specialty area is! I am harder on doctors because they should be held to higher standards than they often are.

I totally understand about the drugs. Why have one when you don't need one!

I hope you get answers soon. Take care.

Annie

Thanks, Annie. I really appreciate your input. I haven't been on here in a while because I've been sidetracked with many things, including negative tests for MG and more episodes. My hematologist, who follows my antiphospholipid syndrome, saw me a couple of weeks ago and was not pleased by my condition. He called my rheumatologist while I was sitting right there. The rheumatologist asked him to prescribe plaquenil, so it looks like we're finally going ahead with auto-immune/lupus treatment. I really hope it helps...

Thanks again for your support. And best wishes to you in dealing with your own health challenges!

Jenny