I'm having a really hectic week, so I can't go into diet right now (will soon).

You have a primary doctor, right? Have they done a urinalysis lately? If you have symptoms, having a UA can be revealing if you have lupus or other connective tissue diseases.

Urinalysis Test for Lupus : Physical, Chemical and Microscopic Analysis

If you have rashes on your skin after being exposed to the sun, a dermatologist can do a biopsy.

Is no one really thinking about symptoms here, or what to test for? Doesn't seem like it.

Annie

No, I don't really have a primary doctor. Second to last visit, he just really blew me off, which was a shock because he's never been like that before, not as a doctor and also since we've been with him for 18 years and our daughters went to preschool and kindergarten together, and are in the same high school. Last visit I only went in because they were supposed to follow up on a call from the physiatrist they had sent me to, but rather than tell me anything over the phone I had to go in, and he just said that I was beyond his expertise, beyond anything he could do, and that's why he just keeps sending me to specialists. He made it very clear that he could not, would not, do anything other than send me back out.

I asked him if, on the referrals, instead of saying something like "is it RA?" because then I just get a yes or no answer (and it's "no" because I don't have a positive blood test for anything) he could just say, "figure out what's wrong with her" and he told me "It doesn't work that way."

I have asked the specialists, when I am there, "well, if it isn't MG/RA/Thyroid/whateverthelatest, then what IS it?" and gotten in reply, "I asked to decide if it is X or not, and I say it isn't", end of discussion, end of visit, end of story. Really dysfunctional, restrictive system they are working under, since this last corporation bought the hospital and almost all of the doctors in the area.

So, no, I don't have a primary doctor, not for anything more than a cough or a sore throat. I see my next specialist, rheumatologist again, on December 24, at 2:00pm. If I tried for an appointment with the endocrinologist, it would be a 7-9 month wait, as they are, and have been for several years now, very short-staffed on doctors, because nobody new wants to come work in this area under that corporation. My neurologist isn't very good at all, she is not up to date on MG or much else, and has no interest in getting up to date, but she's the only one who would take a chance on giving me the pyridostigmine, and since it works she's still writing the prescriptions, but told me she won't go over the 5 pills a day, and nothing else. Will NOT discuss any other potential neurological issues, like the eyes or headaches or anything. Not interested.

A year from now I should have moved halfway down the east coast to a new area, and just have to hang on until then, as we are counting on there being better doctors in the new area. Can't be any worse.

Do you have an urgent care facility? Work the system. I don't encourage not being honest, but you could go in on off hours and say you think you might have a bladder infection. They have to run a UA then. ;)

December is not too far away, but this is ridiculous healthcare. I'm sorry.

Annie

There is no health possible with this system, and the word care has been not just abolished but completely obliterated from use or memory.

But they give themselves awards for meeting business practices standards and product throughput. Oops, I suppose that should be patient throughput.
Poke'em, Pill'em, Bill'em, Bye.

winic 1, You don't know until you try (this latest suggestion).

First, I am not a nutritionist or a doctor. These are only my views. You should consult with a doctor and/or nutritionist (and do research) before starting any new diet plan!

The book "Grain Brain" is brilliant. Grains are not that good for us. There are vegetable-derived noodles, such as Miracle Noodles, that are a low-carb alternative to grains.

Foods that are inflammatory are beef, pork, dairy, and sugar. Anti-inflammatory foods/spices are many, including tumeric, cinnamon, mushrooms, vitamin c, berries, vegetables (dark green ones), and so much more. Drinking lots of good water is very important to flushing toxins out of our bodies. Lyprinol is thought to be a great anti-inflammatory (made from mussels), and good for arthritis. But not enough trials have been done.

https://www.hindawi.com/journals/ecam/2011/307121/

If you have lupus, you shouldn't have alfalfa sprouts. They contain an amino acid called L-canavanine, which can increase inflammation.

Having good proteins throughout the day, very good vegetables, a small amount of fruits (since even natural sugars can cause inflammation in some people), good fats (walnuts, olive oil, olives, etc.), and foods low in starchy carbs is a great food diet to stay healthy. Again, just my opinion.

You need to make sure you have plenty of B12, folic acid, and vitamin D. If you eat like the above, you don't need dairy for calcium and calcium supplements. But knowing your baseline electrolytes and vitamin levels is a good idea.

That's about all I have right now. I hope others will chime in.

Please don't tell me that no one will help you. You just haven't found them yet. More than likely, you have red flags all over your chart. Doctors get scared when patients are upset. So pour on the sweetness!

Annie

Thanks for the info. Not so far off how we eat anyway, or try to.

Hubby's father has been in the hospital for two weeks. Today we got word that there is nothing more to do other than call in Hospice. Hubby just left to drive to his brother's house an hour away, then very very early morning they are driving to a New York airport and flying to Florida to meet up with their other siblings who are also flying in. Hubby and this brother can only stay until Sunday, but at least they get a chance to say goodbye. Dad is almost 92. Their mother has middle-stage alzheimers, and now has to go to memory care, as the assisted living place they are in is not set up to provide the supervision and care she needs without Dad there. She's only 78.

I have a 16 year old who doesn't drive yet, who is in school all day and then dance classes after school until evening (going to be a professional dancer, so dance is important), and a neighbor who will help out with rides and whatever. Very few neighbors by us, the other helpful one is out of the country right now, then there are two elderly ones and one we never see. Two dogs, two cats, two degus, and 60 birds, finches and budgies, in 8 large cages. Going to be a very rough week, mostly on my own since child is not home much and has massive homework every night (senior, taking AP classes.) Wish me luck. Tho, I figure as long as every one gets fed, and all pee and poop ends up in appropriate places or the yard, we are good. Anything beyond that is extra.