The world authority is Dr. Daniel Wallace. He actually WROTE the book on SLE that the other doctors' use. If in doubt, check out what he has to say (in thousands of articles he written or his books).

There's an old joke about what you call the medical student who graduates last in his class? The answer is DOCTOR. Not all doctors are equal. Some give bad advice. One idiot doctor put me on high dose prednisone and then told me to STOP IT cold turkey after 6 months. I knew that was a very bad idea (can you say adrenal insufficiency?) and I changed doctors. Usually the best doctors who are most up on the lastest literature are at teaching hospitals.

I have to agree that some advice I have seen on this list has not been good advice, but for the most part, people on this list try to do the right thing. If they suggest a ridiculous "cure" it's because they BELIEVE in that cure. So it's always a good idea to read ALL the messages and see if several people agree with an idea. Also check things out with your doctor. You and your doctor will become very close friends as the years pass. [g]

As for my credentials, I was a Cancer Information Specialist for the National Cancer Institute, spent several years working at UCLA Hospital in different medical departments and then in Pharmacology (where drugs are designed, not prescribed). And of course I've had this disease for 21 years; that's 21 years of lab work monthly, thousands of doctors' visits, etc. And I ran the local lupus support group for several years. If I don't know the answer, I know where to FIND the answer.....

Tracy

Hi Tracy,
It is funny that you mentioned Dr. Wallace... I saw him for a second opinion when I got my diagnosis of APS (anti-phospholipid syndrome which alot of lupus people have and is also an auto-immune disease) from my regular rheumy. Dr. Wallace claimed that APS (aka Hughes disease) cannot make you feel sick and you must have had a clotting episode to have it. UNTRUE...He did diagnose me with UCTD, and possible Lupus, and kept me on the same treatment as my reg. rheumy had, but his information regarding APS was wrong. I was diagnosed again with it, as well as another genetic clotting disorder when I got pregnant and had to give myself blood thinning injections daily.

I had also seen a hematologist at UCLA to see if I should be on coumadin. My neurologist thought I should be. He also claimed that APS NEVER makes you feel sick and that you cannot have it unless you have clotted. He said I absolutely do not have it as well. WRONG.

So, I agree with what you wrote 100%. Not all doctors know what they are talking about. I have been to MANY of those throughout my young life.

That is wonderful that you were working with the National Cancer Institute. I am also a cancer survivor.......Would it be possible for me to email you if I ever have cancer related questions???

Hugs,
Melissa

Earthwalker, I find it interesting that you brought this up cause I've thought about it before too since we have a handful of people from the UK, Australia, and Canada. In my honest opinion, I think the treatments and diagnosis varies so much from country to country cause of our health care system. As you probably know, the United States is the only wealthy, industrialized nation that does not provide universal health care which puts us amidst some of the greatest health care providers yet we are unable to access them. But on the same hand all of us have to deal with population issues, larger populations will have more experience and cases of lupus while smaller countries might not have a lot to compare to. And on that same note, large populations might mean less individual health care while the smaller areas have more time to dedicate to their patients. And because health care and availability of health care is so important, some countries are able to offer "experimental" or new procedures more frequently (like IVG) and others are left with the more traditional medicines. Also, lupus seems to affect races differently and the climate is a factor in treating lupus as well. Then there are the different regulations by the FDA, EMEA, SUSDP, FSANZ, ect., not sure if I got all those right but my point is they vary from country to country.

As for Dr. Wallace, I have heard so many good things about him and his book. Would I say he is the "authority" on lupus? In my opinion probably not because I think there are many other specialists out there just as intuitive and qualified as he is and all doctors are wrong at some point :p I do think though, all good Rheumatologists and other specialists should read his book so they can build on what they know. Just my 2 cents worth!

Just to clarify, Wallace trained under Dr. Ed Dubois, the man who founded the FIRST lupus clinic anywhere in the late '50s. Wallace has seen more SLE patients than any other doctor in the world. The fact that the UCLA doc AGREED with Wallace should mean something. Have you ever considered that your pain was from another PART of your disease and not from the APS? I'm not doubting your pain at all, but MCTD patients often have overlapping syndromes.

For the record, I have seen Wallace too, but now see a different Rheumy. Wallace, who IS a brilliant diagnostician passed me to a different doc because HE couldn't figure out what was wrong. Even the best docs sometimes get tunnel vision. In this case, my problems were caused by Still's disease and not the lupus. And Wallace missed it.

But when it comes to lupus, Wallace has literally SEEN EVERYTHING. He has the most knowledge and experience of any rheumy. He has also worked to bring in funds for SLE research.

And yes, some patients with APS can have children as you have noted. A friend of mine had 2 children with APS.

Feel free to e-mail me with any cancer questions. I'd be glad to answer them if I can.

Tracy

Hi Tracy,
If you read my post again, you will see that I didnt say anything regarding him and Lupus. He is a rheumy who, in my opinion doesnt know everything about all auto-immune disease's. I would recommend him to someone with lupus, just not APS. My rheumatologist did traiing under Dr. Hughes who is the founder of APS in the UK. I did not know this before I went to dr. wallace, otherwise I wouldn't have gone to another dr. I absolutely have APS (along with other auto-immune issues). There is no question about it. Three specialists since then have confirmed it. My main point was that some doctors dont know everything about all disease's that they specialize in. Where they trained is basically meaningless if they give you false information. How can a person be told that a certain, not very well known about disease I will admit, blatently tell you that these symptoms are NOT part of a disease when they are or can be? So, no, Wallace and the UCLA doctor were not onto something...They were misinformed about APS. And, it wasn't just pain I was in, I was sick as sick can get.

I didnt mean to offend you. And, I wasn't saying that Dr. Wallace was a bad lupus doctor. I was just agreeing with you that not all doctors are equal.
Melissa

I wrote an article for this group called, A Lupus Story giving my wife's history over the last 27 years. Initially using natural therapy.
In all that time and the many leads that I have followed, the one that promisses the most help is Stem Cell Trasplant Therapy. NOT the one that promotes the body bone marrow to produce it's own stem cells, because that requires drugs to kill the patient's immune system and sometimes it takes the patient with it. Too risky for my liking, and not the one using bovine stem cells.
We need acceptance by the authorities to permit research into human stem cell production and transfer.
Kind regards, Don M.

Welcome to Daily Strength. You seem to have such vast knowledge into this crazy ailment. I can tell you will be a great asset. If you read my profile you will see I have tumid lupus which is confined mainly to the skin. Have you ever heard of it?
I hope you have a wonderful week end and feel good.
Virginia

I forgot to say that I am so pleased that you are such a positive and upbeat person and give such excellent advice.
Thank you so much.

Thank you all for your replies. Lively and intelligent discussion is what I have come to expect when interacting with the members of this group. The candour and compassion is appreciated and I am on the "research trail" again, feeling empowered rather than bewildered...love, light and peace to you all.