Clare, I wondered if you lived in the UK. Rach, who is on here as well, lives there, too.

I "get" the NHS. I do appreciate the constraints of socialized medicine. HOWEVER, I cannot and do NOT appreciate the a physician's CHOICE to not THINK and ACT when they have all of the power to do so, especially when someone's life is in imminent danger—as I believe your is. There are no constraints on thinking and caring.

I hope a neurologist will understand that any steroid will make an antibody test look normal when it might otherwise be positive. It's a steroid's job to make those antibodies disappear!

I would caution you about reducing your steroid! It can cause an adrenal crisis, where you have severe fatigue, sweats, and other symptoms such as cognitive dysfunction. And if you have MG, reducing it might bring on an MG crisis.

MIP and MEP don't reflect narrowed airways, but reflect a neuromuscular cause for poor breathing. How did they conclude that you had narrowed airways? Do you have asthma, too?

I've had low B12 and D. They did NOT cause my breathing to tank. Oy vey. B12 is necessary for the production of acetylcholine and might have a slight effect on muscular weakness. If you're deficient in B12, you can get Jarrow Forumula methylcobalamin on the Amazon UK site.

Unless someone is monitoring your O2 saturation while sleeping, there is no way to know if it is tanking. My resting O2 after three days during my MG crisis was 94%, however, my O2 while sleeping was 66%!!! Not good. You need that assessed right away.

Is the "recovery position" sitting up? It might help to sleep in a recliner, if you have one.

If you are shivering, you are probably hypoxic (not enough oxygen). Unless it's a blood sugar issue. Is that under control? And I wouldn't rule out an issue with drugs or an interaction of them.

You need more specialists: Pulmonology, neurology, and possibly endocrinology.

I'm really sorry you're going through so much. Lupus is hard enough to handle. Just work with your rheumy to get the care you need, but please don't rule out heading to the ER/hospital.


JJ, That's sweet of you, but tell that to any of the neurologists I've seen. I doubt they'd share that opinion.

Annie