http://www.hopkins-arthritis.org/ask...-test-734.html

If you do indeed have lupus, then you need to be seen about the edema. If your kidneys are "unhappy," which they often can be in lupus, then you need someone to figure that out. Nothing to mess with. There are a LOT of causes for edema. One main one is congestive heart failure.

Do you have a good rheumatologist?

Have they checked the RA antibodies? (rheumatoid arthritis)

I hope you will get someone to help you soon. And have them do those celiac antibodies! I have celiac and the diet is not bad at all.

Annie

Hey Annie,

I've been seeing a rheumatologist for maybe 4-years or so...I called his office a couple of months ago to go in and see him...I haven't seen him since my MG and thymoma were diagnosed...He had always told me in the past to exercise, not worry so much, and eat well...Maybe this would help my 'arthralgia' (which was actually arthritis, only my joints were never swollen when I'd go to see him) go away...

Anyway, I called his office and told the secratary about the MG and thymoma and that I wanted to see him for a follow-up...Last time I saw him was in November of last year...She said that I need a new referral and that he wouldn't be available until November...She said that I need the referral because that would have been exactly one year since I would see him even though I called at the end of August to schedule the appointment!

Maybe he feels weird about dismissing me for all these years and telling me to exercise, and not worry so much! lol...How can a person exercise when their knees are swollen and they almost pass out from walking on a treadmill...It's not like I didn't have any tests that indicated that I had autoimmunity, either...Anyway, I'm digressing into bitterness...Just wanted to vent a bit too...lol

They've checked for RA, it's always negative...

Would congestive heart failure show up on an ECG and ultrasound of the heart?

Yeah, and maybe your "rheumatism" will feel better if you go sit in your rocker and knit for awhile. No offense to any of you who knit. Better than being a knit-wit.

I volunteered 10 years of my life to the local lupus foundation. Lupus sucks. It can be managed but it also can be a very dangerous disease. (I'm lecturing the doctor, not you, because I'm ticked off.) I'd hide too, if I were him. That antibody test is VERY specific to lupus. I have seen firsthand how it impacts peoples lives.

Yes, they can "see" congestive heart failure on an echo. It's not really something you see but has a lot of criteria such as a low ejection fraction, etc.

Lupus can attack anywhere in the body. You are probably doing okay because of the Pred. Pred can cause edema too, especially if you have too much sodium. You simply need a damn good internist who will send you around to GOOD specialists and then come up with a plan for you. This is plain silly (not you, the doctoring).

You are very smart, Nicky. You know the deal. I could literally go nuts when I think about how doctors treat (mainly) women.

And the RA would be negative on Pred but I suppose you've had it off of it too?

You know what? I think you should list all the diagnosed conditions you have, along with all the positive test results and all their associated symptoms. Then bring the list in to an internist. Watch their jaw drop as they quickly arrange for tests and appts. Wish I could swear.


Annie

Hey Annie,

Sorry that it took so long to reply...I tried replying last night, but my post got deleted, and I got one of those error messages...argh!...lol...I have been tested for RA before prednisone, a few times, and it was always negative...

I do have a list of my diagnosed conditions and undiagnosed symptoms on my comp., but I always feel too nervous to print it and show it to my doctor...I think that I'm afraid that it will be ignored, and it's sorta my last hope...

I was going to ask you...If an ANA is positive, is it because one of the other lupus tests are positive? Like the anti dsDNA test? Or are those two seperate tests? And what does the ANA attempt to destroy? The nucleus of which cells? In other words, what are the symptoms of ANA? I know that the dsDNA destroys the kidneys, but I don't understand why that happens...It's so weird...

This is also sorta why I was very nervous to have a thymectomy, and wanted to ask my surgeon to just remove my thymoma...but I know that's sorta stupid, because the tumuor will come back...But I was nervous because I have read about people with MG getting LUpus after having a thymectomy, especially when they've had 'dormant' antibodies floating around, like me..

When you were working for the Lupus foundation, did you ever come across someone who had MG and Lupus?

Thanks for your help!

This describes the ANA test pretty well. It's not disease-specific, like the lupus tests or the MG tests are.

http://www.labtestsonline.org/unders.../ana/test.html

With lupus, it's both antibodies and inflammation that destroy the body (including the kidneys). Lupus is considered an autoimmune inflammatory condition. Some people only call it an inflammatory disease. Whatever. In lupus, various parts of the body or body systems are "attacked" and damage is done (just like in MG).

Any surgery could make a disease state worse or bring one on. It is a risk that only you (and your doctors) can decide is worth taking.

I knew one woman who had both lupus and MG but I didn't know anything about MG back then (1990's), so I didn't ask lots of questions. There were two or three people on the Braintalk forum years ago that I know had both lupus and MG. The main approach (reducing or stopping the immune process that is attacking you) is the same but there are so many differences between the two diseases!

The most important thing you can do is to see a doctor and get diagnosed if you have lupus. And treated appropriately. I have known people who have died from lupus but I've also known people who are okay. It runs the spectrum, just like with MG.

Being vigilant with lupus is really important, especially when any new symptom comes up. That damn disease can attack anywhere at any time. That's why when I learned of it years ago, I had to volunteer my time and do something to help.

Nicky, I hope you will get some real help soon. You deserve to know what is going on.

Annie